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[Wanderer]

This topic was previously titled "Back after a year away (from MM!) - update and previously registered as MINNIE!" - Update by Emma

Good morning ladies! Previous known as MINNIE, I had to change my log in details, as moved from my old location! Thought my new log in was appropriate, as that is how my brain feels, still! I have still been reading the forum regularly, and still feel in such good company.

Boring recap - awful, awful avalanche of symptoms started 3 years ago, after 18 months of no periods, and cessation, bizarrely of hot flushes. In the space of a week, I had 36 of the 37 "classic" symptoms, with no reason, explanation, or care from the medical world! Three years later, feel exactly the same, BUT, have moved to Dorset, and have a wonderful lady GP, who is the first person on my journey to take charge! Recently saw a very esteemed member of the Menopause Society privately, as was staggered by his attitude, cold as could be, clearly bored, and absolutely no understanding of the "unlevel menopause playing field"!!! My GP was furious, but not surprised, so she is now going to prescribe, and I see her today.

My main symptoms appear to have been caused by a very, very sharp tightening of the pelvic floor muscles that is the effect of very bad vaginal/cervical atrophy, that has affected the whole musculoskeletal part of my lower body, pain in the buttocks, weak feeling in the groin and legs (like flu), ache in the pelvis, and utter disruption of the digestive system! My muscles are now so tight, I can't even pull them in any further when told to, and everything aches so much, as though I have a very heavy period. I can't sit for long, as I get a weird tingling in my lower body, and I can't walk far, as it all aches!! I saw a pelvic therapist, what a waste of time, who told me to do some breathing exercises, and the "sniff, drop, and flop" exercises, great while you do them, but the minute you move, everything tenses again, and while you have uncontrollable anxiety and nervous tension, which nearly takes your head off, and even makes your ears pound, you have no control, as the tension in my case goes straight to the pelvic area! I was put onto Evorel 50 by the so called "Menopause King" but it hasn't done a thing, because I am 56, they all think low dose HRT, is all you need, but I have all the same symptoms as peri, and more! I did start on Sertraline for a while but it doesn't address the main problems obviously. I also use Vagifem, but clearly I need industrial strength!!

I have had to leave a job recently due to anxiety and pain, and find that every time I try to concentrate, I immediately have a shooting pain in the pelvis, I cry all the time, and although didn't think I was depressed before, I now think I am, as there seems to be no help at all for me, and the thought of being like this until my deathbed, is unbearable. I feel so shallow as well, not having a real illness, as so many people put up with terrible pain and worry, and get on with their lives. My lovely mum recently died after a short illness, lung cancer, she was so dignified, never moaned, and I feel ashamed.

I missed you all, and hope that seeing my new GP again today will mean I can give you better news, but I am so happy for those of you who are doing so well!

Sorry for the essay! xxx

[Taz2]

Hi Wanderer MINNIE!! Welcome back. Sorry you are still having to deal with the pelvic floor tightness. I remember posting this link before http://www.pelvichealthsolutions.ca/index.php?cID=254  Was it of any use?

As for your old and new names - it may be possible for Emma to "marry" up your two profiles as I see you are still registered on here as MINNIE.

Good luck with the GP!

Taz x 

[Hattie]

Wanderer

Don't beat yourself up to much - i now have tight pelvic floor muscles and this does make you feel depressed and anxious about the future.

Vagifem wasn't holding back the tide for me - i now believe there is little help out there for this (but that is just my opinion)

There is a pelvic floor specialist in Southampton who may be able to help you - i could give you her name and contact details by pm if you would like me to - she does internal physio for trigger point release. I think she is just private and quite expensive as most physios don't do internal release of muscles.
Are you on any pain medication to help the pain ?

I am trying to build up local contacts (Devon) through a counsellor at my local pain clinic - Dorset is not so far away ! - this condition can become very isolating.

I am sorry about your mum.

Hattie

[Joyce]

Welcome back Wanderer! Sorry you're still suffering.

Sorry too about your mum. 

[Limpy]

Hello again Wanderer / MINNIE.

Sorry to hear about your health problems but really glad you have found a good GP.
Also, sad to hear about your mum.

[peegeetip]

Hi Minnie/Wanderer

so so so sorry to hear about your mum and that your still suffering.
After all this why can't your good doc maybe let you try a tablet HRT at a stronger dose than the patch your on?

Also, don't be so rough on yourself also regarding the illness issue

We can't really compare what your poor mum went thru to what others see as "lesser" illnesses.
However all these lesser illnesses can and will make us feel really awful and ill at certain times in our precious lives?
Modern life loves to make us feel guilty about feeling ill and taking time off/out to get well etc.

I really don't want to upset anyone on this.
But personally, if I feel ill then I've got an illness - whatever it is.

[babyjane]

nice to meet you, I am new so am not going to push myself forward but I just wanted to agree with peegeetip and say don't compare your situation to your mum's. I am so sorry to hear about your mum, it is a devastating bereavement but your illness is yours, no more and no less than any other. If it matters to you then it matters, don't belittle what you are feeling. Just wanted to share that, take care.

[Maryjane]

Hi Minnie, I have all your pelvic symptoms and mine has been diagnosed as Pudendal Neuralgia. 

Mine started in the main in January but warning signs where there much earlier I am 48. I have seen the physio in Southampton, but found the journey to far and now go to London the physio I see had the same problem for two years, so she really does understand.

I was sent down the VA route first and did not respond to vagifem, Ovestin actually made the burning worse.

I have for the last eight weeks seen a very good uro/gynae in London and I am 80% better overall than I was, as my problem was my bladder and he said a lot of women's pelvic pain starts in the bladder! mine was so thickened 7mm with infection, after a quite intensive rotational antibs regime with antihistamines as well after six weeks it is down to 2.5/3mm. He said my PN is irritated for a reason, and he found the main reason, my pelvic floor was like a lump of wood, the physio had a job to move it, but after the treatment she said she would not have recognised it was the same pelvic floor, uro/gyna said the same, also the external atrophy has gone.

I also went to see a skin specialist who takes more than the normal swabs for inflammatory markers, all clear.

I unfortunately have had to pay for all of this, as I knew my local hospital just did not have enough expertise in this area, also a lot of ladies who have these sort of issues are also hyper-mobile and have histamine issues. I have histamine, very easy test a long scratch on the arm at a certain pressure.

If you want me to know anymore then let me know, as I have traveled a very sometimes bleak road but I knew what I had straight away, and just needed to find the right experts. Whatever you do do not do pelvic floor exercises as that will be disastrous until you have a completely relaxed pelvic floor, that's how I got into a worst state, told a had a prolapse when I didn't at all, it is the feeling the damaged nerve and pelvic floor can give, since UTI cleared up that feeling has gone.

[Kathleen]

Hello Wanderer and so sorry for your loss.

I agree with the other ladies in that we manage our conditions/illnesses in our own way, there really is no comparison.  My mother also never complained when she became seriously ill and died a quiet death, now it may be a generational thing or just due to differing personalities but I don't do anything quietly these days. Everyone I meet gets to hear about my menopausal woes, whether they like it or not because being honest about how I feel helps me to cope and of course it allows other people the opportunity to talk about how they feel as well. This forum plays a huge part in that and I think we all benefit from the support of other women.

I am almost 58 and started using patches in January, being prescribed the lowest dose which of course had no impact seeing as my last period was four years ago! I've now worked up to 75 mcg and I'm hoping for a miracle any day now.

I see that you have been visited by 36 of the 37 classic symptoms and there are many who can identify with that.  One of my earliest problems was constant headache and I would jokingly say to my family not to worry, all perfectly natural as it was on the list. Oh how we laughed.  Well as the months went by and the list of problems grew I stopped laughing and so did they. Now, four years later no-one dares mention the list.

It's good that you are back, Wanderer and I hope you can find the right treatment for your pelvic floor issues, I see that you've already been given some good advice.

Wishing you well and keep posting.

K.

[Wanderer]

I can't thank you enough already, such kind words! Hattie and Maryjane, I thought I was the only one, I hadn't ever really noticed PFD on this site before!

My GP is not going to change my HRT, as she thinks that there is such a complex picture that has built up, pain causing tension - tension causing pain. She has started me on Pregabalin, very expensive drug! It will calm all the nerve endings, and once I start to relax, hopefully the pelvic floor will drop. I am on 75mgs twice a day. Just taken one dose, and don't if I imagine it, but I seem to be breathing slower and calmer already, probably a placebo!! Ha!

Thank you so much again, PFD girls, I will look into your advice! xxxx

[meno lesley]

Hi Minnie

How lovely to hear from you. So sorry to hear about your mum and that things have not improved for you.

Our journeys are so similar, we are both 56, hit by all sorts a few years ago and neither of us out of the woods. Bit worried about what you said about high up meno bloke as have an appointment with one in London in October.

Have got to go out so sorry for short message.


Welcome back

Lesley x

[Maryjane]

I am on Amitriptyline they are all drugs for nerve pain. When I first had my problem I could feel the tension, I then learned to breath properly, imagine breathing right down into the pelvic floor, your chest stays still and your stomach and the feeling of your pelvic floor rise.

I have internal physio and she can tell if I do one breath wrong just by how my pelvis floor feels, it is hyper responsive to everything, and the amount of nerves down there crossing her there and everywhere is worse than spaghetti junction.

Also diet will play a big part, if you have IBS at all then give up all wheat/gluten as that also irritates the pelvic floor, has made a big difference to me.

[dahliagirl]

Hi - is this any use to anyone?
http://www.bbc.co.uk/programmes/b04d1kv8
(from 8min 30sec)

It is a women's physio talking about pelvic floor hypertonia.  I listened, having heard it called pelvic floor dysfunction (which I have been told about in terms of my constipation problems - learned the "sniff, flop, drop" thing too, to no avail).  It is not what I expected; it was more about pain during sex and sitting down.  It also mentions the pressure point release therapy, which I heard of from someone who had this from a physiotherapist, after problems following prolapse surgery.

[Hattie]

Dahliagirl

It is good that Womans Hour had an item on this - its a long time since i listened.

What stood out for me was

the age of the lady concerned.
the fact that she went to a London Hospital that helped her.
the acknowledgement by the physio that other factors may be involved.
the fact that the presenter said that there is help but you have to find it yourself.

One thing i have learned over time is that you become your own detective with this and what applies to one person may not apply to you - there are different medical disciplines involved with the pelvis - gynaecology, urology, colorectal ,vulva, physio etc. One area of expertise does not usually cross into another and you have to be careful.

This lady is 40, she is in London and physio was able to help her.

[Maryjane]

I have just listened to this, my pelvic floor was very hypertonic and the uro/gynae I am seeing traced it back to me having polyps removed 20 months ago, and the using of a catheter and not giving me antibs. I had been saying this to all that I had seen, as I complained two weeks later that things weren't right down there, and they all said no it was coincidence, but he was the first to say that is where your problem started, in the bladder, and the pelvic floor was from then on tightening around the burning pain and getting tighter and tighter, which had then irritated the pudendal nerve.

Unfortunately the type of physio that is required is a £120.00 an hour, as there are few and far between who do this type of physio, for those ladies that can't afford it is very unfair, it has stretched us financially and the uro/gynae that is sorting me out is not cheap either, I could go on his NHS list but that is months and I can't leave it months.

You really do have to be your own detective with this, and I am now confident in the team I am under, the physio and uro/gynae work together along with the dermatologist I have to see as well.
But I know it is going to take time, but the physio I see has had the same problem so she really does know what its like physically/mentally.

Finding the right specialists is key, and unfortunately that generally means London and costing a lot of money. On this journey at times I have felt like I have produced the next generation, and now off you go, my daughter is pregnant and has been diagnosed with SPD, which is basically an unstable pelvic floor so I am trying to keep calm and not panic.