Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: EnglishRose on October 03, 2018, 10:50:28 AM
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I have got myself into a mess crying, not eating, anxious, depressed, after starting with some strange (to me) symptoms down below. Twinges of desire but without any sexual thoughts or feelings or desires. They started 3 days ago and I think they are subsiding and I appear to be getting more twinges of pain more than "the other"
Ive stumbled upon a condition called PGAD which is such a horrid condition that some women commit suicide. Its linked to a nerve that effects the genitals and these poor women feel like they are on the verge of orgasm or need to have one all the time but it never goes away no matter what they do. Their lives are over. Cant work cant socialise. You can imagine the shame and humiliation and people think its funny or that they are "lucky" NOT AT ALL.
I have pretty much convinced myself I have this problem now. I went looking for same symptoms I have and all Google brought up was pages of PGAD websites. I think I searched for "Constant Physical Genital Arousal" because thats how I feel not to the point of orgasm but PGAD s progressive and the first 6 months the symptoms can wax and wane but it gets worse and more intense and after 6 months your at the worst. Honesty its terrified me.
i am so depressed and anxious I cannot eat food. I stay in bed all day or on the PC searching for some kind of sign that what i am experiencing is not so unusual and more importantly other women have it or had it so I can at least feel there is a chance it will pass and I don't develop PGAD
I dont even know why I am writing this other than to reach out to other women who have health anxiety and can relate
My life stopped when I found that website. All i think about is the symptoms and what they may be and its always worse case scenario
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I can't advise on your symptoms but understand completely your anxiety. I had post menopause bleeding nearly 3 months ago and since then it's been appointments but mainly endless waiting and worrying. I've had biopsy which they want to repeat, now I have uti. I'm totally stressed and the anxiety is unbearable. Looking up symptoms makes me feel worse but I still do. Try and see your gp and just plod on and try not to think of worse case scenario . I know it's hard . I'm totally exhausted from health anxiety. Be kind to yourself.
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Hi EnglishRose, I totally get where you're coming from as I've also experienced off-the-charts HA with meno - at times I've had to take half a 10mg Temazepam to calm/stop the anxiety.
I also can't advise - however I would say I've experienced something similar-ish - in my case I felt it was connected to ghastly vaginal atrophy, the loss / major change / shrinkage in tissue structure in the whole uro-genital area - that created high sensitivity, pain, nerve exposed kind of feeling of horrid feeling (sorry not explained very well). Using Vagifem 3 times weekly (inserted low) and Ovestin (sparingly) on the outside area has eased it.
I don't know if this is of any help. Could your symptoms possibly be connected to vag atrophy?
As SS says, a trip to an (understanding) GP could help, might be an idea to request this soon.
Also I scare the cr@p out of myself googling symptoms, I know it's not good and creates so much more stress - I have to force myself to get off PC and go for a long walk.
Hope things calm down for you.
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Hi EnglishRose, I totally get where you're coming from as I've also experienced off-the-charts HA with meno - at times I've had to take half a 10mg Temazepam to calm/stop the anxiety.
I also can't advise - however I would say I've experienced something similar-ish - in my case I felt it was connected to ghastly vaginal atrophy, the loss / major change / shrinkage in tissue structure in the whole uro-genital area - that created high sensitivity, pain, nerve exposed kind of feeling of horrid feeling (sorry not explained very well). Using Vagifem 3 times weekly (inserted low) and Ovestin (sparingly) on the outside area has eased it.
I don't know if this is of any help. Could your symptoms possibly be connected to vag atrophy?
As SS says, a trip to an (understanding) GP could help, might be an idea to request this soon.
Also I scare the cr@p out of myself googling symptoms, I know it's not good and creates so much more stress - I have to force myself to get off PC and go for a long walk.
Hope things calm down for you.
I am crying so hard right now. Thank you so much for sharing your issues, this was so needed and YES it could be VA but I am not aware of the full array of VA symptoms. I am 50 in Jan, I have had private blood tests and proven to be in menopause with deficient oestrogen and high stimulating hormone. Although I still do have cycles/periods but they're very light due to the high amount of transdermal natural progesterone ive used for years possibly eight. I am aware 500mg prog is a lot, I started using it when "oestrogen dominance" was a trend so I have always thought I did not need oestrogen as long as I was "ok"
I am not sexually active with my partner. No problems just something we fell out of the habit of doing. I think he lacks testosterone as he has his own health issues.
I will see a doctor on Friday about my issues.
The best way I can describe it is I am aware of my vagina now. There are periods of pain and stabbing nothing major but then periods of sexual sensation like very early stages of arousal but no mental or physiological thoughts. I am not stimulated mentally for it to happen.
Some women here say thats perfectly normal to have those physical feelings but not on and off all day surely? They add its common for women in their late 40s early 50s to get a high libido but it does not feel "normal" it feels abnormal.
I am due on my period as my boobs are big I am having hot flushes I have acne (which is unusual) I have been spotting for 10 days too.
Im terrified. If VA can trigger physical sexual arousal then i have some hope.
I have just walked the dogs but my heart was not in it. I am totally convinced I have this rare but untreatable disorder called Persistent Genital Arousal Syndrome which is linked to the perineum nerve. I cannot find anything that says it can be treat or cured its all about learning to cope with the symptoms. Some women have committed suicide from the never ending torture and lack of understanding in general with people thinking its a blessing or that they are lucky, it could be worse. Its actually a pain condition that the brain perceives as sexual. It sounds terrifying to me.
My mini dachshund 7 month puppy runs to me when she hears me crying and I pick her up and she licks my tears away...sorry, I digress.
I don't have any friends and i feel desperately alone and depressed. I cannot eat my stomach is in knots i am crying and almost to the point of telephoning Samaritans or something. My partner is here but he cannot relate. He hugs me and tells me to stop thinking the worst case scenario and that forums are full of the negative because when people get well or recover they move on with their lives, they only visit forums in the moments of crisis which is what I am doing. Very few come back and say "Just wanted to update and say I am much better"
:(
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I can't advise on your symptoms but understand completely your anxiety. I had post menopause bleeding nearly 3 months ago and since then it's been appointments but mainly endless waiting and worrying. I've had biopsy which they want to repeat, now I have uti. I'm totally stressed and the anxiety is unbearable. Looking up symptoms makes me feel worse but I still do. Try and see your gp and just plod on and try not to think of worse case scenario . I know it's hard . I'm totally exhausted from health anxiety. Be kind to yourself.
I just need a hug. you know what I mean? My life is just crap at the moment. I work from home so I am not working anymore my mind isnt in it. My onlu escape is sleep which comes easily thank god but I am waking up dreading the day now. Hard to imagine that 3 days ago I was taking photos of my dogs on a walk.
Thank you I know your right of course. I appreciate your post xxxx
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I really feel for you. I wake and am gripped with nerve spasms and I cant shake them off. I know how you feel but my partner says these times will pass and have faith things will improve. It's a hard slog when you contact the GPs and my situation has dragged on and on. You just have t o keep strong. Thinking of you and all the best.
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I really feel for you. I wake and am gripped with nerve spasms and I cant shake them off. I know how you feel but my partner says these times will pass and have faith things will improve. It's a hard slog when you contact the GPs and my situation has dragged on and on. You just have t o keep strong. Thinking of you and all the best.
How do you mean nerve spasms?
Do you mean in your body? Or genitals?
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I would wake anytime after 3.30 a.m. deeply fearful, prehensile :-\ and until the various medications kicked in, this continued.
:bighug:
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Nerve spasms in my body, a really uncomfortable, draining feeling. Sometimes a good long walk makes me feel better. Just had my letter from the gynaecologist today, 6 weeks after biopsy. Says I need another cos they didn't get any tissue the first time. I can't face another so having a scan instead. The gynaecologist is not happy with me not having another biopsy and if he thinks the scan is not OK he won't prescribe hrt vaginal cream. Without that my VA is not very manageable. So really anxious like I have been since July.
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I would want to know why there wasn't enough sample taken initially! and what would the Gynae expect to be finding on the scan that would mean no cream? Go to your GP and ask for it. They are messing about, probably no joined up thinking :bang: if so, you will be the 4th person today who has experienced lack of thought in the NHS!
It is usually the GP that prescribes ;-)
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Sometimes these problems arise from adverse experiences in our life, sometimes from very early in life, which we may or may not realise are connected. Sometimes we don't even remember what they are. Unprocessed stuff is held in the brain stem, nervous system, and therefore the body. Getting decent therapy will help us to work through such experiences. I have had very good results with Lifespan Integration therapy :)
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Problem is CKLD is there is some lining thickening but all else looks ok apart from them not getting enough tissue. Like roseenglish says it's taken my life over. I just want to use local cream and get on with my life. Feel like things will never get sorted. I had the biopsy under general anaesthetic so goodness knows why they couldn't do it properly with me spark out!
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I would be asking the question. Is there any rush? I would insist on getting symptoms settled and then re-considering another exam under GA. Quality of Life Girl - which you don't seem to be getting with all this pushing and shoving from one idea to the next.
Bo - as an aside, did you pay for this particular therapy?
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Bo - as an aside, did you pay for this particular therapy?
Yes I did - it's only available through private therapists. Some UK & US LI therapists offer Skype sessions if no-one local to us
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Like roseenglish I am really struggling through each day, thinking every twinge is cancer. I don't know how to cope.
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When my body didn't like a form of HRT (progesterone good old progesterone ::) I had a mega kind of neurosis - cause that's what it is really... about everything except health! I lost all my confidence, I got agoraphobic, couldn't answer the telephone (huge problem as I work from home and the telephone is huge part of my job!). Couldn't sleep a wink. Worried that: I was going to lose every customer I ever had immediately over the following week, hubbie and I were going to be destitute, lose the house, have no money to live on when we retired, that the phone would ring and someone would tell me someone close to me had died, didn't want 21 year old son going to work in case he got run over on the way or was injured at work. Didn't want hubby to leave the house, turned off all the plugs in case the house burnt down, shook if someone came to the door - I couldn't do anything at all because I thought I had forgotten how to do everything! and very nearly convinced myself that my life was no over and I was better off dead -basically - turned into terrified jibbering wreck - I literally lost my marbles. Stopped the continuous progesterone and it went away!
It's a terrifying experience - I've noticed from the comments here that the meno generally and reactions to some of the HRT can cause extreme anxiety and irrationality - you are not alone suzysunday.
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Thank you so much.
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When my body didn't like a form of HRT (progesterone good old progesterone ::) I had a mega kind of neurosis - cause that's what it is really... about everything except health! I lost all my confidence, I got agoraphobic, couldn't answer the telephone (huge problem as I work from home and the telephone is huge part of my job!). Couldn't sleep a wink. Worried that: I was going to lose every customer I ever had immediately over the following week, hubbie and I were going to be destitute, lose the house, have no money to live on when we retired, that the phone would ring and someone would tell me someone close to me had died, didn't want 21 year old son going to work in case he got run over on the way or was injured at work. Didn't want hubby to leave the house, turned off all the plugs in case the house burnt down, shook if someone came to the door - I couldn't do anything at all because I thought I had forgotten how to do everything! and very nearly convinced myself that my life was no over and I was better off dead -basically - turned into terrified jibbering wreck - I literally lost my marbles. Stopped the continuous progesterone and it went away!
It's a terrifying experience - I've noticed from the comments here that the meno generally and reactions to some of the HRT can cause extreme anxiety and irrationality - you are not alone suzysunday.
I am on 500mg of progesterone only and constant - transdermal. I have been on it for years at least 8. No Oestrogen
I had my bloods done and shown as oestro deficient with high stimulating hormone
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How are you doing roseenglish? Have you been to your gp today like you said. Hope you are a bit better.
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How are you doing roseenglish? Have you been to your gp today like you said. Hope you are a bit better.
Hello 😋
Thank you for asking
Yes I went. Explained my sensations and associated anxiety asked if any other woman had come with similar symptoms and she told me “noâ€
Which was upsetting as I hoped she'd tell me that it was not an unheard of symptom for meno
I took some literature about the nerve condition I'm worried about and she told me she HAD heard of it but was not privy to how to treat it,
She's going to read the info and make some calls to gynos she she believes are more familiar with the condition and then come back to me with a plan
In the short term I was offered a nerve blocker or HRT as my estrogen is deficient but I use a LOT of progesterone for 8 years
She gave me a short term course of HRT called Tibalone and told me to reduce the progression in large drops 200 mg per week to see if introducimg oestrogen helps me with the issue to my genital pa
I e been in tough with a lady here who had the same arousal sensations but she was shy to ask about it. Bottom line she told me the symptoms were at their worst when her estrogen was at rock bottom and the symptoms got better as she balanced her hormones out so I hope that's what will happen with ne
I've taken 1 pill of tibolone tonight and I feel dizzy and sleepy
It's a steroid!!
Anyway ty for asking
Liz xx
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As we age oestrogen levels drop off so I don't understand 'deficient' :-\. It's surely natural?
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From reading here roseenglish I belive dizzy and sleepy is pretty normal in the first couple of weeks with Tiblone. I haven't take it myself but loads of ladies here complain of that when starting out on it. It does settle.
Forgive me for asking again why are you only on progesterone and nothing else? Oestrogen is the feel good homone out of the two, progesterone is the one that causes most of the problems, bloating, depression, weepiness and generally makes you feel rough. The real factor in the menopause is that the oestrogen levels drop significantly and so you get the flushes, depression, lethargy etc Our bodies when we are fertile balance both, as we get older its like a see saw and the oestrogen drops leaving more progesterone around to make us miserable.
When taking HRT as I understand it if you have a womb the progesterone bit is only there to ensure that the lining of the womb sheds and does not thicken causing its own problems and to get the balance back again because we are putting the oestrogen back in our bodies.
The Tiblone is likely to settle - stick with it I know that's really really hard when you feel so bad already you don't want to add any new symptoms but most likely it will actually make you feel better if you can get over those first weeks. :yes:
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From reading here roseenglish I belive dizzy and sleepy is pretty normal in the first couple of weeks with Tiblone. I haven't take it myself but loads of ladies here complain of that when starting out on it. It does settle.
Forgive me for asking again why are you only on progesterone and nothing else? Oestrogen is the feel good homone out of the two, progesterone is the one that causes most of the problems, bloating, depression, weepiness and generally makes you feel rough. The real factor in the menopause is that the oestrogen levels drop significantly and so you get the flushes, depression, lethargy etc Our bodies when we are fertile balance both, as we get older its like a see saw and the oestrogen drops leaving more progesterone around to make us miserable.
When taking HRT as I understand it if you have a womb the progesterone bit is only there to ensure that the lining of the womb sheds and does not thicken causing its own problems and to get the balance back again because we are putting the oestrogen back in our bodies.
The Tiblone is likely to settle - stick with it I know that's really really hard when you feel so bad already you don't want to add any new symptoms but most likely it will actually make you feel better if you can get over those first weeks. :yes:
Because I self diagnosed myself as being "estrogen dominant" donkeys years ago. I read that estrogen was the stimulating hormone that causes rage, insomnia, anxiety etc and Progesterone was dubbed as "Natures Valium" the calming hormone that relaxes us and it was backed by so many case studies and tests to show all the benefits of prog and all the negatives about estrogen. This was all on the website that sold natural progesterone cream so i knew they were biased but at the time id made a certain kind of sense to me, and so I used more and more to combat the symptoms of PMS, insomnia, anxiety, rage (never had rage in my LIFE before then) I was slapping so much of the stuff on me following the website advise as the theory was to apply enough prog to make it the dominant hormone and then slowly reduce the prog to create a balance.
Each time you increased the prog cream the estrogen symptoms would flare and this was apparently normal and would pass.
Here is the link: https://www.progesteronetherapy.com/progesterone-forums.html
When I went to my doctor yesterday and told her I think I am using too much prog and needed so estrogen she turned to me and said
"You think?! ... you know I could tell you off, I respect your intelligence and self research but you are quite stubborn and have gone down this path of belief that estrogen is all bad and progesterone is the "cure all" and here we are"
I started crying not because I was angry or upset but because I know she was correct.
I had not even explained to her at that point the issues I was having. I am devastated she told me no other woman had approached her with the symptoms I am having. I so hoped to find more women like me. I know there are at least 3 women on these forums that either had it and it just vanished no treatment or got 90% better when they got their hormones balanced. One lady knows all about it and thinks she had a cross over from Sexsurge/PGAD but told me she was a lot better
I PRAY I am over thinking this I PRAY this will be just a hormone balance issue. Nothing would make me happier.
Sorry vent over.
My estrogen at the last test was <18
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Pre-menstrual syndrome is in the 10-14 days prior to a bleed. Once the period begins the symptoms go. Until the next cycle. Symptoms can be eased by eating correctly, every 3 hours 24/7. Maybe have a look-see at the NAPS web-site, I may have suggested already :-\
Years ago is how long because the body alters. Particularly during The Change. What would you have liked your GP to discuss with you? Is there a Practice Nurse with menopause knowledge? Did she explain why other ladies haven't presented with similar issues?
Ladybt28 explains it really well :thankyou: I may have suggested keeping a mood/food/symptom diary to chart how you are feeling. Something concrete to keep an eye on issues. [so tired 2day].
With Forums such as this when problems are presented, one takes suggestions and decides which are appropriate. Puts to 1 side for later consideration or ditches completely. We are not medics but are willing to share experiences. Maybe it's the progesterone that is causing your problem. What have you decided to do ?
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I hope that the use of oestrogen will balance out these awful feelings you are suffering. I was on tibolone for 18 months and it made me feel tired and aching all the time and the acne was bad! I hope it levels things out for you. There are many references to pgad on line which maybe you have seen. It's tough your gp hasn't heard of it. Have belief that things will improve but it may be slow and sometimes you feel you are going backwards, but believe you will get your health back. It's hard I know as I don't feel as though I've made any progress in 3 months! Had a miserable letter off my gynaecologist not happy about not having a second biopsy and have to see him in a couple of weeks! Feel awful and anxious now. Just have to plod on. All the best to you.
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Just seen on your other thread that you have seen the online stuff and that it frightens you. There are probably other things it will be, maybe meno related. Hope your gp gets you some answers. Not knowing is really frightening.
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Just seen on your other thread that you have seen the online stuff and that it frightens you. There are probably other things it will be, maybe meno related. Hope your gp gets you some answers. Not knowing is really frightening.
I've joined a secret Facebook support group with 300 members worldwide.
It's a very unique disorder which effects everyone differently.
The hardest part is trying to live with the anxiety and depression I'm getting from the symptoms.
It waxes and wanes but I'm aware of it down below like a constant itch that can't be scratched. I've tried once a day 4 days in a row still feel it.
The last 3 days at around the same time I have what I can only describe as a hot flush/anxiety attack/arousal all at the same time... heart is racing and I'm aching with lust but head is racing with panic...the panic and heat comes first I think .
I lie on bed on my side and just wait it out ... counting flowers on the wallpaper or distraction techniques, it slowly fades my heart calms down and then I get cold and sleepy l
So, people still trying to tell me it's normal, how they wish they had what I have because their libido has dwindled
All I ever wanted was for people to either be so kind as to pm me or reply and tell me they had an extreme high libido like mine and it's not unusual or unheard of.
I had one kind lady who said she had it for 3 weeks and it passed. Others have been quite cutting and told me to stop over thinking it.
Anyway sat in two camps hope it's meno and it will move with time or it could be PGAD which often happens to women at peri and menopause time and how long it will last is anyone's guess as it's caused by various things, the perineal nerve, pelvic congestion, undiagnosed UTI.. cysts on the base of the spine...
Sorry I'm rambling ... if you ever want to chat or connect PM me. It would be good for me to listen to other people's problems take my mind off my own.
I was on the phone to a brave lady from the USA. Suffered for 16 years ONLY just been diagnosed ! Had nerve blockers which gave her 5 days relief but then it all returned. She's fighting for more
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Nobody can seriously understand unless they have felt this. Someone saying lucky you is such a massive insult they have no idea. Keep positive this is a symptom of unbalanced hormones don't think of pagd I did and drive myself mental worrying. It will get better slowly I am just glad you are confident enough to discuss this matter it will be affecting other people who are too embarrassed discuss this . I did discuss this with a few people who found it appropriate to laugh at the situation which made it easier to suffer in silence x
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Nobody can seriously understand unless they have felt this. Someone saying lucky you is such a massive insult they have no idea. Keep positive this is a symptom of unbalanced hormones don't think of pagd I did and drive myself mental worrying. It will get better slowly I am just glad you are confident enough to discuss this matter it will be affecting other people who are too embarrassed discuss this . I did discuss this with a few people who found it appropriate to laugh at the situation which made it easier to suffer in silence x
Thank you Donna. Xxx I live in hope because of your experience and willingness to be open with me
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Nerve spasms in my body, a really uncomfortable, draining feeling. Sometimes a good long walk makes me feel better. Just had my letter from the gynaecologist today, 6 weeks after biopsy. Says I need another cos they didn't get any tissue the first time. I can't face another so having a scan instead. The gynaecologist is not happy with me not having another biopsy and if he thinks the scan is not OK he won't prescribe hrt vaginal cream. Without that my VA is not very manageable. So really anxious like I have been since July.
Sorry I don't mean to be insensitive but are you getting the nerve spasms in your genitals? It's just with you saying body I wasn't sure.
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I did for a long time but it only happens very occasionally now so keep positive x
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No spasms through my body. Had a tense night, feel like weeing but don't think it's uti still. Probably this horrible atrophy. Don't let people say you over think stuff cos when your body aggravates you and you don't know why or how to stop it you search for answers.
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Take a pain relief? It eases the feelings that I need to wee .......... ;).
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Went to a walk in health centre as this uti keeps lingering. Got some antibiotics again, the trimethoprim that I've had before, so hope this will clear it finally. The other antibiotics, nitrofurantoin, we're horrible. I am so fed up of feeling poorly.
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You should not have been given an Anti-biotic without a sample being sent to a Lab.. If you need one in future for something serious, it may not work! Did they not recommend pain-relief? Is that the AB that you take for 3 days?
Do you plan to wait the 2 weeks B4 the appt., or get some appropriate treatment to ease symptoms? There doesn't seem to be much joined up thinking in the NHS these days :'( which causes distress and is wasting NHS time. You don't have to undergo any treatment or investigations if you don't wish, it is your body. But you do need a GP who understands what might be causing your discomfort - maybe a Practice Nurse?
Treatment for vaginal atrophy will ease most 'need to pee often' symptoms. Have you read the other threads about bladders etc.? Sorry can't remember the title, will bump it for you when I do.
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The previous samples were sent off and did show some red cells I think she said. There was blood in the urine when it first started 2 weeks ago and it's never gone completely, so it must be a uti. Yes they are for 3 days. Yes I will contact gp tomorrow. I have been using shop bought lube/moisturiser and still getting green discharge with ovestin.
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Blood does not always equate to infection! Blood in the urine can be caused when small cells drop from the vaginal walls when atrophy begins. Appropriate treatment usually eases those symptoms which are interconnected. Who ever designed women 'this way' needs soaking with icy water!
How do you feel this morning? :thankyou: Birdy.
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Thanks clkd, you are right about serious design faults!! Birdy, yes I have atrophy, diagnosed over 2 years ago, but off all hrt till this gynaecologist gets what he wants. Spoke to gp but have to make do with the shop bought local moisturiser until gynae says ok. See him in 2 weeks today can't wait for it to be over.
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Hi there!
I believe you have symptoms of vaginal atrophy. I have it and I get surges of what feels like sexual stimulation without the mental involvement if you know what I mean. I also get burning, spasms, escaping air bubbles and pain on my right deep inside my V.
There is an excellent vaginal atrophy Facebook group you might want to join for more info! It's run by Jane Lewis who just published the excellent book My Menopausal Vagina.
VA is horribly distressing. I use Vagifem, ovestin and bio identical HRT. Doctors know jack shit about the condition. Sorry to be so blunt, but GUM clinic staff tend to be far more knowledgeable. X
Oh I am soooo confused! So torn.
I have joined a PGAD group who are convinced I am in their camp (I don't want to be)
I have also joined a Menopause group who some ladies can relate to my symptoms most cant or wont
And it looks like I will be joining a VA group now.
The more I pull away from the PGDA group the less anxious and stressed and depressed I feel. EACH and EVERY single woman (like you) who responds no matter HOW uncomfortable it feels is helping not only me but countless other women confused and embarrassed by this sensation.
Yes, I do have escaping air bubbles but usually just before my period, had that for a few years now and I knew this was linked to the thinning walls of my vagina. My vagina is not dry but the discharge is watery at best and has been for years used to always be healthy and plentiful. I pee about 20 times a day always told myself I had a small bladder.!!!
I have experienced a false urgency to urinate for 3 long hours that kept me awake and i recall other nights keep needing to pee tiny amounts and it kept me awake.
No matter how much I peed (or how little) I came off that toilet and felt the need to pee even though I know it was not real.
I get stabbing pains in my cervix (again before my period) assumed instead of cramps the pain now went to my cervix,
Bearing in mind my periods are 2 weeks apart now.
These new sensations are sometimes but not often accompanied with burning feeling but also a sensation of sensitivity upper buttocks and coxis area
My STUPID doctor told me to come off the progesterone altogether and put me on Tibolone which should only be prescribed to POST MENO women and its a steroid that forces the body to create its own Progesterone, Oestrogen and Androgen? Took it for 3 nights and got less and less sleep each night. I am not taking it anymore. I asked her "Has anyone else approached you with these symptoms" and she shrugged and said "no" which is not what I wanted to hear. She took some info I printed off for her about PGAD and said she had heard of it but doesn't know how to treat it so will make some phone calls to gynos. Why couldn't she just refer me????
I wrote to her over the weekend begging her to provide pain relief or nerve blocker as the sensations are having a truly devastating effect on my mental health and was told by the practice manager via email that she does not have time to read emails and doesn't know much about this condition so I have to go back in the morning in open surgery;
I am so desperate to know its not that horrible disorder PGAD but the people who are in that group kind of want you to have it if that makes sense. They do tell me if may go of its own accord and that many members have joined and vanished leaving us to assume their problem went.
:(
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Hi roseenglish - to be honest I really think you should continue to give the Tiblone a go. A few days will not help at all. It needs at least a fortnight and maybe 3 weeks to give any indication of how it may help you. In terms of being post meno - I was prescribed it in the cross over period when they didn't know if I was still peri or post as I had been on hrt since age 47, it was difficult to tell. Too much progesterone is not good for the body. I know you are feeling really weird right now but you do need to give yourself time to work out what is actually going on otherwise it's hard to describe to the professionals and it is hard to work out what is actually the right course of action. I completely understand whilst all this is going on you just want it to stop but it's not going to unless you can work out what is happening and take the appropriate action. I have had to take hrt for 3 months when I have thought it possibly wasn't the right thing but at least it has allowed me to keep a diary and then I have been able to work out from here and with the doctors what IS the right thing or got closer too it. Chin up keep going, things will settle but the answers don't come quick :) ??? :love:
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Why didn't your doctor give you some oestrogen? Your levels were very low and you have over-stuffed all your receptors with progesterone. You surely need some oestrogen.
As to the groups with other conditions, I have noticed that they always bend new members or symptoms to fit their group profile. Everything is the problem of B12 deficiency to the B12 group. Or it's all the result of low vitamin D to the vitamin D group. In the thyroid group I do still follow, every symptom is thyroid, related to inadequate medication. But I can see that half of the symptoms of menopause overlap hypothyroidism in a big way. But if I suggest this on that group I will be ignored or argued with. On this group quite a lot of people could well be hypothyroid, but it doesn't get taken seriously and people are happy to just have a TSH blood test by a clueless GP and be told their thyroid is "fine", when a bit of research will show up problems.
I drove myself nearly mad a few years ago by joining too many FB groups for hypothyroidism and the different forms of treatment. They are all too evangelical about their own "thing". I felt immediately better when I left all but 1 milder group and I've never felt that stressed since. If your genital area is drying out through lack of oestrogen it could well be aggravating the nerves to give you horrible symptoms. Don't concentrate on the unusual, focus on what you know to be happing, i.e. you are in peri-menopause and your oestrogen levels were virtually non-existent.
I've had periods of bladder problems. Desperately wanting to pee, bladder hard as a rock, impossible to actually pee more than a dribble. No infection. The best relief I got for that was to go out into the garden and crouch down and have a pee in nature. The position of the crouch is much more conducive to passing water properly. I have a big garden full of trees and not overlooked. But I'm sure you can find a quiet spot, after dark if necessary. It worked.
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Hi roseenglish - to be honest I really think you should continue to give the Tiblone a go. A few days will not help at all. It needs at least a fortnight and maybe 3 weeks to give any indication of how it may help you. In terms of being post meno - I was prescribed it in the cross over period when they didn't know if I was still peri or post as I had been on hrt since age 47, it was difficult to tell. Too much progesterone is not good for the body. I know you are feeling really weird right now but you do need to give yourself time to work out what is actually going on otherwise it's hard to describe to the professionals and it is hard to work out what is actually the right course of action. I completely understand whilst all this is going on you just want it to stop but it's not going to unless you can work out what is happening and take the appropriate action. I have had to take hrt for 3 months when I have thought it possibly wasn't the right thing but at least it has allowed me to keep a diary and then I have been able to work out from here and with the doctors what IS the right thing or got closer too it. Chin up keep going, things will settle but the answers don't come quick :) ??? :love:
I know.
Okay here's the thing. Only THIS morning I was in the deepest despair. SOOO tuned into my vag waiting for the next sensation or asking myself '"Is it there?" It became an obsession and I KNEW I was going to MAKE it happen from obsessing about it...I was spiralling
Last night I had 5 hours broken sleep which I blamed the new HRT on and was aroused and terrified as normally sleep is my escape from this symptom in the 1 week I have had it. I was in a very dark place this morning convinced now I would be anxious and awake every night. I even telephoned MIND but of course what can they say? I was just totally defeated and afraid and had no hope no future that I wanted any part of. The weekend was bad I spent it led in bed curtains closed just on my tablet researching, crying, desperate to find others that had what I have that did NOT have that dreaded PGAD
Then around 3pm something just clicked. My perspective changed and my mood lifted, just like that. I looked online and booked a private appointment with a gynaecologist local to me. I have also have telephone appt with a Menopause Specialist Nurse tomorrow.
I decided the only thing i know for SURE is I am peri menopause and fast approaching menopause. What ever my symptoms are they are linked to hormones.
Then I went to the toilet and I had bleed and I had that: "ah ha!" moment. My inability to rationalise this symptom for the last 7 days was down to a severe case of PMS. I never really know when I am due on these days I go off my symptoms and this period has been VERY intense.
The last two periods I had stomach cramps from bowels and the runs (never had that in my life) This period I had the most intense hunger so annoying my stomach was constantly churning and twisting for food despite my anxiety. It was so annoying as I did not want to eat anything at all but my stomach would not settle without constant food. I was having hot flushes, breasts were especially achy, I had spots, it was like PMS x 10 PLUS I had proper stomach cramps which I have not had for years either. The insomnia I have had last night is also a very old PMS symptom I have not had for 3 ears.
I USED to have a feeling of sexual desire before my period many many years ago and actually having a sexy dream was a sure sign I was due on my period. This happened last night for the first time in 2 years but I did not connect the dots. I just assumed it was all part of these new urges/feelings and it added to the anxiety.
I have been spotting for 2 weeks on and off but was not sure I was due on a period until I saw the blood and it was a huge relief. I have got cramps, my skin around my bottom and vagina feels like its sunburnt and I am sore inside my cervix area like cramps bit vaginal (thats a peri menopause PMS symptom I never used to have before hitting 40) and I am STILL staving hungry despite eating all day.
I climbed on my partners lap and I wanted sex so did he but we're both so afraid of aggravating anything ! How sad is that? I have self diagnosed myself to treat my symptoms to be PGAD when I may just be having a strong sexual desire after so many years. I was horny all night eating dinner but I did not get upset or stress out about it even as I held my puppy because it's NOW it feels like my body trying to tell me to make love before the ovaries shut down. NOW it feels like I remember it. What I had prior was like spasms or twinges little niggles but they did not want me to make love at all. Where as now I feel naturally horny like I used to when me and my partner first got together.
Maybe the odd sensations were a build up to this (?) After so many years of being closed down and totally void of action maybe it was "jump starting" me?
I dont know. Its a theory. Today in terms of those specific symptoms has been the best day since it started. I have just felt naturally aroused after holding my partner and being caressed. It passed in 15 minutes after we got on with dinner.
I HOPE its just one of those strange meno symptoms that will pass. I dont mind having a high libido for the first time in my life but I needed to know if what I was feeling was actually just that or something more sinister. Time will tell. xx
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Why didn't your doctor give you some oestrogen? Your levels were very low and you have over-stuffed all your receptors with progesterone. You surely need some oestrogen.
As to the groups with other conditions, I have noticed that they always bend new members or symptoms to fit their group profile. Everything is the problem of B12 deficiency to the B12 group. Or it's all the result of low vitamin D to the vitamin D group. In the thyroid group I do still follow, every symptom is thyroid, related to inadequate medication. But I can see that half of the symptoms of menopause overlap hypothyroidism in a big way. But if I suggest this on that group I will be ignored or argued with. On this group quite a lot of people could well be hypothyroid, but it doesn't get taken seriously and people are happy to just have a TSH blood test by a clueless GP and be told their thyroid is "fine", when a bit of research will show up problems.
I drove myself nearly mad a few years ago by joining too many FB groups for hypothyroidism and the different forms of treatment. They are all too evangelical about their own "thing". I felt immediately better when I left all but 1 milder group and I've never felt that stressed since. If your genital area is drying out through lack of oestrogen it could well be aggravating the nerves to give you horrible symptoms. Don't concentrate on the unusual, focus on what you know to be happing, i.e. you are in peri-menopause and your oestrogen levels were virtually non-existent.
I've had periods of bladder problems. Desperately wanting to pee, bladder hard as a rock, impossible to actually pee more than a dribble. No infection. The best relief I got for that was to go out into the garden and crouch down and have a pee in nature. The position of the crouch is much more conducive to passing water properly. I have a big garden full of trees and not overlooked. But I'm sure you can find a quiet spot, after dark if necessary. It worked.
I am seeing a private gyno on Thursday and have a telephone consultation with a meno nurse tomorrow.
I am unsure whether I am feeling the sex surge I am on my period now my mood is stable and I feel like I want to make love. Not because of annoying twinges but because I just feel more sexual.
I have no idea if the sensations that I have had are all part of this. I like to think its my ovaries pushing me biologically to make love and procreate before they cease to work. Time will tell xxx
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Hi roseenglish
Are you still taking the tibolone and reducing the progesterone?
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Good you are seeing a gynae
Hope it goes well.
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Hi roseenglish
Are you still taking the tibolone and reducing the progesterone?
Just reducing progesterone
I am waiting to speak to the gyno about this rather than taking the advice of a general practitioner
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I'm glad you're feeling a bit better - good luck with the gynae appointment x
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How did your appointment go with the gynaecologist? I hope you got some answers.