I’m at the far end of my endo journey and my gynae has given me some options to consider. I was wondering what your experiences were. I’m 50, diagnosed 13 years ago and experienced all the usual stuff with Stage 4 (life-long non diagnosis, large endometriomas, x2 laparotomies, x1 laparoscopy, tubal clipping, hydrosalpinx and 8 failed IVFs). I’ve been on Prostap and Tibolone for 18 months which works for me and my endo is silent which amazing. No periods, pain, monthly nonsense! 😊). I don’t want a hysterectomy as I know everything is a mess in there and don’t want to invite new problems I don’t have like prolapse, bowel injury etc. My gynae had offered: (1) Stay on Prostap/Tibolone to age 55. (2) Get ovaries and tubes out with add-back Tibolone til 55. (3) Go on Ryeqo. All options have pros/cons and I’m leaning between option 1 or 2. I’ve read good stuff about Ryeqo but don’t like the usual trial of seeing if the hormones actually suit you - I’ve tried many and they don’t always work well for me before arriving at one that does, hence my current regime as patches, other pills didn’t work well for me. Has anyone stayed on Prostap/tibolone til the ‘end’ or, had their ovaries out with HRT instead? I’m only considering oophrectomy to eliminate ovarian cancer risk - I’m not high risk but since I’ve not had children and had years of hormone treatment and ivf, the risk is slightly higher. I’m happy to stay on the Prostap injections but trying to be logical for the future.
Surgery or medical treatment options - Endometriosis UK
Surgery or medical treatment options
I'm 51 and just had a hysterectomy with ovaries removed. I had stage 4 endo going in to this op but I had no pain either (i did when I was younger). I had multiple fibroids and blocked tubes etc. and i was bleeding terribly (even on Zoladex) so the hysterectomy was the best option. My advice would be to simply stay on prostrap into menopause. If you can tolerate Tibilone and it's stopping the peri menopause symptoms then just stay on it. My consultant had women on Prostrap (prostrap is better than Zoladex for long term use) for years. His longest patient was 15 years. You'll need regular bone scans and you'll need to stay healthy but you don't have to have an operation. The hospital I'm at just won a research award based on long term use of Prostrap with 100 patients, none of whom developed bone mass issues. That's not to say it can't which is why you need to lift weights and look after yourself. In the future you could ask for another MRI just to check on everything x I think keeping your ovaries is a good thing as they give you hormones for life even after menopause. If you don't have any problems on Prostrap then I wouldn't change it. Finally, at the first attempt for a hysterectomy (where they found endometriosis and stopped the operation) my consultant said "I'd have to remove 300 sets of ovaries to prevent one incident of cancer." Stay healthy and don't invite trouble if you can help it xxx
Thanks for sharing that. I’m interested in the bone density stuff. Apparently there’s massive waiting lists for DEXA scans in my area in Scotland so the bone density checks is concerning me. I think there’s one private service in Edinburgh that I could pay for but it’s ridiculous if I had to do that as part of my treatment plan. Unfortunately I can’t have an MRI due to severe claustrophobia (had to abandon one a few years ago).
What I’m not clear about is, does having an oophrectomy also cause bone density issues? Or does the HRT protect us in that regard, regardless whether it’s surgical or chemical menopause? In my mind, Prostap or the surgery effectively has the same end result. I asked my gynae if it was better to keep my ovaries mirroring what you’d said and and she said that by this age, it’s not going to affect my overall health and that those risks are more concerned with younger women who have their ovaries removed.. So many opinions…I don’t need to rush this so might just stay on Prostap since it works. 😊
Read some stuff by Lara Briden she's ran a successful menopause clinic in Australia and New Zealand. Whilst she's not a doctor, she supports the views of Dr Prior who is well known in menopause circles. I think you're right in that both the op and chemical menopause do the same job. Neither cure endometriosis but HRT does tend to protect bone mass loss as you age (as long as you start it at the right time which is early). There's a good book called the XX Brain which explores clinical trials and HRT. The body continues to make estrogen as we age through aromatase - it doesn't pump out hormones but it does provide some. However if you stay healthy and lift weights then your bones mass reduction should be minimal. Good luck xxx
What you could also do is swap Tibilone for proper HRT. I say "proper" because Tibilone is so very low HRT. However, it was designed to protect bone mass. With stronger HRT there is always the risk of endometriosis returning (and sometimes even without it as endometriosis makes its own estrogen). Also whilst ovarian cancer is prevented by the removal of them, HPV virus can still hang around in the vagina cells xxx
H8 I'm currently on prostrap injections and they are working for me. Hoping to stay on them long term and avoid a hysterectomy. Hope you have a stupendously marvellously blessed day xx
Well people who have a higher risk of cancers and especially the ones hormone based. Myself I can't take hormone replacement due to mu history and family cancers.
My inside is a total mess of adhesions, scar damage and large distortion of organsI have have Endo everywhere even in my lungs. I can't have a Hysto as organs stuck together and risk bowel and bladder incontinence or new nerve pain.
Having Ovaries out won't get rid of new Endo nor taking hormones as this will probably elevate Endometriosis. If Endo has setup new areas it could be independent of thr Ovaries as research is showing that other glands in the head can make Estrogen or even possibly convert one hormone into another found in a few patients
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Check what you eat as there are Estrogens in some foods like Soya.
Thr most important thing you can do is have check ups, tests, scans as you age
Hi
If you’re feeling well on the current treatment, stick with it.
I had everything out at 46 and regret it.
It’s impossible to get it all out as it spreads throughout the body via lymph and can be microscopic
Endo produces it’s own oestrogen supply locally and doesn’t die off.
My surgeon recommended removing ovaries and said that *if* I had symptoms, I could get a *bit* of HRT, like it was no big deal. When I did try HRT (transdermal)I found that it was nothing like the real thing despite all the hype. The dose is much too low, delivery uneven, half life too short…I couldn’t get it right and felt awful. Still not right now.
Thanks. Sorry to hear that things aren’t ok for you. I’ve been in chemical menopause for 18 months on current hormone regime so haven’t had the hard shock of surgical menopause. It’s not my first rodeo on Prostap having done this for a 6 month stint 12 years ago during my ivf years where I didn’t take tibolone right away which was absolutely awful. I appreciate how important it is to get the hormones right. My endo is presently well controlled with reasonable mood/symptoms stability on my current treatment so hesitant to mess with that - I get the odd twinge on the left side ovary but that’s my historically rogue area with endometriomas, hydrosalpinx and clipped tube where I’m sure it’s an utter mess in there. My gynae says we’ll never know when my real menopause has kicked in by this stage in treatment and with my age (I’m 50). I’m not concerned about ever knowing that as I’m just delighted that I don’t have the hell of horrifically painful periods anymore which was always was my main symptom (and a wrecked ability to have kids!!). I’m interested to understand if I’ll feel the same with ovaries out compared to sticking with the Prostap chemical menopause. Guess that’s the tough one with no clear answer and I need to weigh up the risk/benefit of effectively taking that risk. Hope things get better for you. x
Endometriosis since I was 21
What options do I have left?
Prostap and blood pressure
Any treatment options I’ve not tried? 
Undecided whether to have another surgery or try medical treatment 
