I keep being told that my symptoms should... - Endometriosis UK
I keep being told that my symptoms should diminish by the time I hit the menopause. Is there anyone out there who can verify that?
Hi
It is a myth that menopause 'cures' endometriosis. While many women's symptoms may improve or seem cured- there is no cure for endo. 2-4% of endometriosis cases diagnosed are in post-menopausal women, some of whom have had hysterectomies and ovary removal. There needs to be so much more research done on the disease and doctors need educating to stop perpetuating the myths surrounding this disease. ie: if you have no periods, you cannot have endo or 'pregnancy cures endo' or hysterectomy cures endo. Here is an article for further info: health.am/gyneco/more/endom...
Hi Beau83
I was kind of thinking along those lines as yes, if a hysterectomy can't cure it, then how would the menopause? I will have a look on the website link, always good to read up on Endo from different sources.
I have had faith in my gynae for quite a few years but am now beginning to realise that just because he has a good bedside manner and to me 'saved my life' the last time I was struck down badly with the debilitating Endo, that even he may be now 'clutching at straws'? I suppose I have another 5 years or so of coping with each different step of this illness.
Admittedly, the reason for my last lap was due to not having a period for 3 months (thats 6 bleeds for me as I have a 2 weekly cycle after having the Mirena fitted) and the pain/exhaustion hit me with such force once my period did resume, I was barely dragging myself through the day. So isn't this proof that if you stop the periods, once the hormone that induces bleeding kicks back in, it makes the Endo grow more. So, after going through the menopause, perhaps taking HRT or the fact that you do still have hormones circulating around your body during that time, the sneaky Endo will definitely start to grow again??? Ahhhh, not sure how much I can take of this, I want to be there for my grandchildren when I eventually have them. Won't be much fun if I am having to sleep all the time. Also won't be much fun for myself as each year that goes by, the exhaustion seems to get worse and worse and I am barely living at the moment (I can actually say that I have only had 3 'nights out' this year grrrrrr)
Anyway, if I am not getting upset about all this, I am feelling anger. Not good for the Endo - deeeep breaths.....
Thanks for the advice x
It really depends on the individual - it's not a myth that pregnancy and menopause improve endo as this is true for many endo sufferers, but for others the symptoms continue after this.
I believe it depends on what's causing your pain - in my case, they think my pain isn't from the endo but from nerve damage after years of chronic pain. This type of pain and adhesions will obviously not improve due to menopause.
For those women whose pain occurs only during ovulation and periods, there's a good chance that menopause or pregnancy will help them. If you have pain more often, it probably won't.
I once had a gynae appt where I said I can't live the rest of my life like these - he said don't worry, I've never seen women in their 70s or over with pain like this. Great! At the time I was only 25!
At last, I was beginning to think I was alone with this issue. I have struggled with extensive endometriosis and adhesions for many many years and had repeat surgeries which started with removal of damaged fallopian tubes. After this the pain returned and after investigations and a laparoscopy and hysteroscopy they discovered the endo and adhesions had spread throughout my pelvis and stomach! One of my tube stumps had restuck to my bowel and the other side it was glued up and a right mess. The endo had travelled into my stomach and 'as much was removed as was safe to do so' apparently.
I had initial relief then pain crept back. I tried Mirena, Zoladex and HRT Tibolone and that did not work either. The failure of Zoladex apparently told gyne it was now adhesions causing my problems. Just entering my fifties I was told it should improve as menopause kicked in and if not, a Bilateral Salpingo Hysterectomy (radical hysterectomy) and removal of ovaries was the next step. I went to a talk by a leading endo adhesion gyne who confirmed that leaving ovaries increased cancer risk! He indicated that radical hysterectomy was the only way forward to remove every trace of endo and adhesions. Terrified by this drastic option I have yet to come to a decision as the risk for further adhesions from such invasive surgery is extremely high. I live in day to day pain and symptoms with my bowel, bladder and hip pain, low back pain, fatigue not sure which way to turn, I am 54 now. The adhesion barrier used by NHS is not the latest and best on the market I was informed, probably due to cost! It is believed that oestrogen drops dramatically once ovulation stops and this starves oestrogen which feeds endo. This does not mean existing endo and inflammatory lesions magically go away, they don't. Every further surgery to remove endo and adhesion deposits can create more adhesions. It is a vicious cycle. This is why many women continue to have problems post menopause and so far there is nowhere left for these poor women to go.
I am one of many of those women and life is difficult and very painful and depressing.
It is a massive gamble to undergo further radical surgery and the odds of failure are huge.
Most endo support groups talk little of problems during and after menopause concentrating on younger victims with fertility problems but of course do an excellent job.
However, it is a big issue and as others have commented it is a often hidden problem
for many.
