Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: jooleea on October 27, 2016, 05:39:27 PM
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Advice please .. Ive been feeling desperate since my hysterectomy in July 2015 . I am 52 and was having regular periods up until the op where ovaries and womb are removed due to adenomyosis. I currently wish I never had the operation as I no longer feel myself , have burning hot sweats that wake me with a jolt about 3 times a night and early in the morning … I now go to bed wanting morning to come !!!! I have tried …estradot patches . esrtrogel , tablets and have now been referred by my G.P to an N.H.S gynae last week who prescribed Elleste Solo MX 40 patches ( applied yesterday ) . I know this is all a bit hit and miss , but Im mainly missing !!!!!! Some days I have to mentally deal with an hour at a time as I've been feeling so low and tearful ( I do also take citalopram !) Can anyone help ??? Has anyone been through this ??? Does testosterone help anyone who has been plugged into surgical menopause ??? I absolutely hate to admit it but there have been the briefest of moments where I have wanted to end it all .. :'( I done loads of online research but get so confused by an obviously wide and varied topic .Help and direct me a little , Id so appreciate it . Thanks guys ! :-\
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I can't advise regards your situation, but hopefully a lady called Tempest will be along as she is/has walked your path.
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Thanks Maryjane . :)
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Hi, Jooleea!
I just want to tell you that you're not alone - I'm a surgical menopause lady myself and had my surgery just a few months before you in April 2015 (I'm 47, by the way).
This is such a tough road, isn't? Did you have any signs that you were in peri menopause before your surgery and did you start some form of HRT straight away after your operation? I see that you have tried a few different types and this is not unusual as it takes time to get a good 'fit' with HRT (especially with us surgical ladies)!
How knowledgeable was the Gynaecologist you saw of ladies needs who have had their ovaries removed? Did he discuss testosterone with you or offer to check your blood levels of both circulating estradiol and testosterone?
If I can be of any help to you, I would be happy to offer a bit of support and maybe some advice if I can so that you can hopefully access good treatment.
Sending you hugs!
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Hi Tempest ! was hoping to hear from you . yep its sooo tough . I had absolutely no signs of peri menopause at all . Started on HRT straight after op , but unfortunately was very sick due to it exacerbating a migraine attack and the G.P i saw around this time said I shouldn't be on Hrt ???!!!!The gynaecologist I have seen most recently ( this week ) was a young girl , probably late 20 's who was obviously not English >>> a bit lost in translation. I hoped I would be seeing the gynae , Mr Scudamore , who's supposed to be very good , but obviously when my name was called I saw this lady instead , although he was there seeing another patient ( luck of the draw ). I was very disappointed that I sat in silence for a couple of mins while she read my notes to discover why I was there . So again , feel I was prescribed something else to try in a very unconsidered trial and error way . My follow up appt. is in 7 weeks ( NHS for you )! maybe you can suggest to me what I should ask for or to try , then I might get somewhere rather than the doctor looking down the never ending list of meds. to try . I am needless to say very confused !! have done as much research as i CAN . I am interested in the mention of testosterone though , will they be willing to try this route on the Nhs or again maybe its not right for me . I have a blood test next week .. only for oestrogen though … although the hospital have given me the envelope to take to the doctors next week for the bloods and it says oestrogen on it , maybe I can add testosterone too ????? thanks again ! Im really thrilled you have contacted me and understand my state of mind and body !
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Hi, Jooleea!
You definitely need to see someone with good knowledge of how the surgical menopause should be managed. I'm so sorry that you didn't get to see Mr. Scudamore this time around. I'm wondering where you are in the UK, and if we can find out if there is a specialist Menopause Clinic near you? Is Mr. Scudamore General Gynaecology, or does he run a Specialist Menopause Clinic?
You most certainly can ask to have your Testosterone level tested by your GP. Are you aware of the latest NICE guidelines regarding prescribing this to ladies like ourselves? And is your GP up to date on the guidelines? It never hurts to print off your own copy and have it to take with you, so that you can point out that it clearly states also that any woman experiencing complex problems relating to menopause (and this most certainly is us surgical ladies) is entitled to be referred to a Menopause Specialist Clinic. Your GP should be able to arrange this for you, or if indeed Mr. Scudamore covers this speciality they can contact him and ask that you are seen specifically by him due to your difficulties with finding an effective HRT since your surgery.
I know when I got to the point where I felt as if I'd had the stuffing knocked out of me, it was very hard to muster the strength to 'fight' my corner' to get good treatment (and I'm still on that road right now, but under a very good Specialist at last).
The first and most important step is to find an effective estrogen replacement for you - for myself, I found the Estrogel to be far too unstable in dose delivery and I also tried Premarin, but the side effects weren't tolerable for me. Once your circulating estradiol level is at a comfortable level for you and stable, the Testosterone can then be added and this can help with mood and energy as well as libido (although libido is the only indication for prescribing in the guidelines)!
I have also found myself that I am very sensitive to large increases in estrogen, and in my research I have found this to be true of quite a lot of us surgical ladies so the mantra of 'go low, go slow' seems to be the the most useful guide. This is why you need a knowledgeable and careful hand helping you to find the level of HRT that you feel most comfortable with (as well as the most effective and comfortable delivery method).
It all does take a little time to work toward finding a good balance, but it IS worth taking the time initially so that you can feel well again.
If I can be of any help at all, please don't be afraid to ask - us surgical ladies are in the minority so it's always good to share knowledge so that we can help and support each other. :)
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I'm here to help too! -
Surgical as from june this year trialling oestrogel .. waiting for testosterone.. have felt pretty crap too but slowly improving.. have appointment with nick Panay team on Nov 30.. got gp referral..pm if you need anything.. it might take some time but you should def get referred to specialist if your gp can't help
Abby xx
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Morning. And welcome
Very quick reply from me as I'm away on holiday and catching up on a day of no sleep whilst travelling but just needed to say you're in good hands with these ladies
I'm a hysterectomy lady from years ago, kept ovaries but they failed then recent scan couldn't find my ovaries but wanted to say about Testosterone . I don't think the levels need to be tested. It should go by symptoms. I tested mid way in range but have almost zero libido
On @ day 17 of T gel and feel slightly lifted in mood and definitely less tired but NO change in libido. Quite frustrating that if a woman had good libido but low mood and zero energy she wouldn't get the chance to sample it PLUS I'm experiencing worse hair loss. But like anything I think we deserve to be given the chance. Better to have tried and failed than to have never tried and always wonder what if
Sorry if jumbled but just wanted to add that bit in but I'll leave you to these ladies as their experiences will be closest to yours
Xx
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Thanks for taking the time to reply . I won't be beaten by this ! I too have zero libido , but currently feel thats the least of my problems … Im so pleased that everyone , especially Tempest have been full of support … and of course have a fab holiday :)
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Hi again Tempest ! thanks so much for your support. I live in Leicester and Mr Scudamore is a general gynae . covering hysterectomy etc .( I asked to see him as I have heard good things , but only hysterectomy related ) So menopause conditions are not a speciality . I am sure in the past months I came across a menopause clinic in Nottingham , although I can't remember where etc. (I know Notts. fairly we'll and as Im a bit car phobic would be happy to travel there ! ) Do you know if I am right ??? If so is this the sort of clinic I can be referred to on the NHS ?? Be even better if there was one in Leicestershire ( I have given up my job in teaching this summer due to my condition and savings are at a minimum ! )I found it interesting that you suggest low dosage of HRT , as my estrogen levels are very low and one would assume that high dosage is needed , so thanks for that advice . As I mentioned I will be taking Elleste solo MX 40 for the next 7 weeks until my next hospital appt . Would love your guidance Tempest on what I should do ..should I go back to my GP and express my concerns about my hospital appt . and the fact that the doctor read the notes while I was there and prior to my visit hadn't read my notes , therefore making a decision about my treatment in 5 minutes .Or should I wait until the follow up in 7 weeks with this new patch and insist on seeing the consultant I thought I would be seeing …. Mr Scudamore .. Very confused with going forward on this. Thank-you so much again for being there for me ! :)
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Thanks abby . so lovely to hear from you . I just think my Gp is obviously lacking any knowledge in this area , although he has a very good reputation within the practice and don't want to change to another Gp and have to explain /convince anyone else of my history etc . ( 10 minute appointments and all that !) I think I need to go to him and literally say I want referring to this clinic and to see this consultant .. I don't think he even knows specialist clinics exist because he has referred me to a general NHS gynaecologist ….so if anyone knows of a clinic in the Leicester / Nottingham region who could see me on the NHS with a G.P referral pleeeeaaase let me know .xx
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I think there is a specialist clinic in Nottingham - I am thinking of asking for a referral myself.
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Hi there ! Let me know where and who you go to , and Ill do likewise . Good luck . xxx
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See my other thread about finding a specialist. There is one at the QMC, follow the link to specialist at the top of the page. You need referral from GP. I'm hoping for a recommendation from somebody one here to see a private specialist. Will keep you posted.
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okay . Not that computer savvy !!! bit will see if I can do it ! thanks and good luck too. x
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Well , heres hoping you might read this Tempest !!
I had my oopherectomy in July 2015 and am still trying to find the right form of HRT. We have spoken before , but to re cap . I am 52 and had everything removed when I had my hysterectomy . I have most recently been prescribed Premarin , but after taking for a hard 5 weeks , the symptoms were just getting so much worse … extreme hot flushes , little sleep and feeling generally edgy and unstable . I was taking Cytalopram , but stopped this so as to get a clear idea what the real effect of HRT might be. I am currently taking 2 pumps of estrogel a day . could you give me some advice as to whether you think this dose might be too high ? You have mentioned that lower doses after surgical menopause could be more effective. i am seeing dr zenia Haoula , for the second time in february in Nottingam and wondered if you thought it might be worthwhile asking about Testosterone , I feel really very low , tired and with little energy and have had sex once in the last 18 months !! If so how much ( i presume this is a gel ) does one use . tO back track a bit my gps are really lacking any knowledge and I googled and asked for the referral to the circle clinic at queens medical centre in Nottingham to see dr Haoula ( I live in Leicester , so I'm about 1 hour away ), and while she does seem to have more knowledge , at my appointment showed me a list of all the HRT medications available and asked me which one id like to try … now i have some knowledge , but not that much ! hence i went for Premarin. she booked a follow up to see me in 4 months , but as it didn't suit I've brought the appt, forward . I neglected to ask what i should do if this happened, as its not that practical to just nip and see her , and the clinic is 1 afternoon a week and covers other gynae , related problems , so I'm not sure that she is a particular specialist in the HRT field .Still at my wits end , I feel I am a different person side this op . She told me i should be positive and nit negative about my hysterectomy . Its very hard not to be !! so sorry to rattle on , but really any advice re ; estrogel and dosage and possible testosterone would be much appreciated ! x
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Hi Joolea, I am also a BSO lady and yes there is a meno clinic at the QMC in Nottingham. I am from this area too. I see a meno specialist privately in this area, , who is very good - I can try to message you direct with details if you like.
I am on estrodot, started on femoston but got terrible headaches after 2 months.
Rhiner
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Thanks so much for your reply . yes , that would be really helpful if you could send me the details of who you see.
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And do join in at our new thread for Surgical Menopause ladies, joolea! :)
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Well , heres hoping you might read this Tempest !!
I had my oopherectomy in July 2015 and am still trying to find the right form of HRT. We have spoken before , but to re cap . I am 52 and had everything removed when I had my hysterectomy . I have most recently been prescribed Premarin , but after taking for a hard 5 weeks , the symptoms were just getting so much worse … extreme hot flushes , little sleep and feeling generally edgy and unstable . I was taking Cytalopram , but stopped this so as to get a clear idea what the real effect of HRT might be. I am currently taking 2 pumps of estrogel a day . could you give me some advice as to whether you think this dose might be too high ? You have mentioned that lower doses after surgical menopause could be more effective. i am seeing dr zenia Haoula , for the second time in february in Nottingam and wondered if you thought it might be worthwhile asking about Testosterone , I feel really very low , tired and with little energy and have had sex once in the last 18 months !! If so how much ( i presume this is a gel ) does one use . tO back track a bit my gps are really lacking any knowledge and I googled and asked for the referral to the circle clinic at queens medical centre in Nottingham to see dr Haoula ( I live in Leicester , so I'm about 1 hour away ), and while she does seem to have more knowledge , at my appointment showed me a list of all the HRT medications available and asked me which one id like to try … now i have some knowledge , but not that much ! hence i went for Premarin. she booked a follow up to see me in 4 months , but as it didn't suit I've brought the appt, forward . I neglected to ask what i should do if this happened, as its not that practical to just nip and see her , and the clinic is 1 afternoon a week and covers other gynae , related problems , so I'm not sure that she is a particular specialist in the HRT field .Still at my wits end , I feel I am a different person side this op . She told me i should be positive and nit negative about my hysterectomy . Its very hard not to be !! so sorry to rattle on , but really any advice re ; estrogel and dosage and possible testosterone would be much appreciated ! x
Have you only recently started to take HRT at all since your op in summer 2015? If so no wonder you are finding things difficult - since, if you were not near menopause before your op - you will have been plunged into sudden menopause. Were you having regular periods before your op?
Therefore it will take some time for your body to adjust to having oestrogen again. In your position, if after 3 months (on the oestrogel) you are feeling no better I would suggest you ask fo a blood tests to see if you are absorbing the estrogel. Although blood tests are unreliable, for women in your position it might help to understand what's going on and whether in fact you need a higher dose.
It is important to get oestrogen levels at a normal level and stabilised before introducing testosterone.
Fancy telling you to be positive about your hysterectomy! That's all very well but if you are not feeling well then how can you!
Hurdity x
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Thanks Hurdity ! I have tried a variety of HRT medications and the estrogel is the best yet. Is there a particular blood test I need to ask for ??? pardon my ignorance ! Just want to ask for the right test and what would deem to be normal levels ??Thanks
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… and yes , I was having normal regular periods before my op . Problems with HRT folioed afterward re.. severe migraine attacks when dosage of patches was changed and for that matter the type of HRT prescribed . so its been a real mine field I also get severe hive like rash breakouts .. urticaria , which I never had before . I have told the gp and specialist about these , but am told this is a separate matter . Im very confused . I take Fexofenedine to control these breakouts , it works to some degree. But my main concern is the hot flushes and these wake me suddenly in the night , and the anxiety and general feeling of not being myself .
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I think some women in your position are given blood tests for estradiol - to see if they are absorbing the gel properly - but this is a specialised area - hormone replacement following surgical meno - but the gynaes should be attentive to possible issues... she could also test for testosterone although this is often prescribed ( off licence by gynaes) without testing and on symptoms alone. It is important that T replacement is not too high though and as I said defo not before oestrogen levels are good. Annie0710 I think has experience of this and is in your position (well sort-of)?
Hurdity x
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I can answer re: the uticaria Joolea. I started having this during perimenopause, when my estrogen levels were fluctuating and estrogen was dominant in relation to falling progesterone. Following my surgery and being on no HRT for a year afterwards, it went away. Whilst raising my Estrogel dose above 2 pumps, it appeared again. My GP checked with my anaphlaxis consultant and she confirmed that estrogen (at least in my case) causes a rise in histamine release from mast cells. I walk a very slippery tightrope with all this (and this is another reason I may now be stopping systemic HRT altogether - I can't risk things getting worse and having episodes of idiopathic anaphylaxis again).
Everyone is individual of course, but things have become ever more complex for me - my specialists are having a hard time working out exactly what is causing what at the moment, but at least they are now liaising with each other. I've been chasing a lot of this up this week. I can say though that for me, it has caused me a great deal of stress and anxiety!
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Thanks Tempest. Thats really interesting and informative. ITs reassuring to know that as i had thought , the rashes were indeed linked to my hormone levels in some way . I can at least now impart this very useful information to my " specialist " and GP . IT seems are situations are very similar in many ways regarding the fact that i feel my oestrogen levels are low , but am maybe in a position where I am unable to increase my HRT dosage further due to the urticaria . ( I have a blood test next week so I hope this will reveal my oestrogen levels ) I may be in touch if I need help with deciphering the results. I hope you get yourself sorted though , It seems your condition is going through a complicated , confused time .I really sympathise as its so much more difficult to decipher the problem when there are so many factors involved , hormone levels , allergy symptoms etc. Keep in touch , and all the very best and thanks again for taking the time and trouble to help . xx
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You're most very welcome, Joolea! If I can be of any further help, please do give me a shout won't you? xxxx
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I will do . you'll get there Tempest . It just tests your patience , doesn't it ..when all you want to do is get on with life . Take strength from that positive story you suggested i read about the lady who is now fine albeit after 4 years of 'hassle' ! and all her problems re HRT etc. are now a distant memory . I guess you me , me and probably everyone else hover between giving up totally and just dealing with the day to day symptoms and getting a fighting head on and feeling we won't be beaten by our symptoms striving to find the answers re medication. It does consume our lives and its a hard balance to deal with mentally .Thats why this forum is a godsend and we can all be strong and support, understand each other as we do . Sound a bit heavy don't I !!! But a big thanks again . You keep me sane . x ;)