Decisions re possible surgery

[Gem43]

Hi I'm 43 with endometriosis and adenmyosis. Initially diagnosed with endo at 29 via laperoscopy. After chatting with the endometriosis nurse it seems these are my options.

1. Stay as I am (mirena coil in situ) and be referred for pain management.

2. Zoladex injections (chemical menopause).

3. Surgery to remove endo from the various places but not remove womb

4. Surgery to remove endo and hysterectomy.

I had surgery in 2019 to treat insicional hernias in c section scar so also have a mesh. I've asked to see the consultant to discuss all options but this won't be until the new year!

Such a lot to consider but was wondering what other people have chosen to do and what your experiences are please?

Thank you

Gemma

[Moon_maiden]

Hi

It is tough choices. I was diagnosed at 51 so further ahead re getting to menopause. I had a hysterectomy in 2020, glad I did, it did help the pain, but not totally. It’s not a guarantee for pain relief, no operation is, not for Endo. I’ve had three since, gallbladder, appendix and adhesions. I didn’t fair well with Zoladex but if you do a search on the forum you’ll see some women have.

It’s deciding what you want to try. It could be there’ll be more results from the drugs trials by Edinburgh next year and you’ll have a new option to consider.

[Gem43 in reply to Moon_maiden]

Thanks you so much for replying. Much appreciated. I did have 9 months worth of Zoladex following lap when I was 29/30. A couple of months later I fell pregnant with my first baby after struggling too before treatment! Zoladex worked well for me at that time so hoping it would do again. Fingers crossed for the drugs trials - us ladies need all the help we can get. 😘

[Moon_maiden in reply to Gem43]

That’s good you had a baby, not easy with this disease at times.

Maybe Zoladex would work again, one option to keep in mind. Have regular bone scans though if you do.

I’ve been keeping fingers crossed last couple of years for the drugs trial, 😂 taking too long….

[Henley13]

It could have been me writing this! Also diagnosed with endo and adeno at 28, now 44, have mesh due to uterine prolapse (after a VBAC involving ventouse, wish I'd chosen to have a c-section again but its only hindsight and your c-section scar has caused a problem for you.) I'm also facing a choice between the options you list. Currently mirena in situ and starting with pain management but waiting list long so finally seeing someone face to face a year after being referred.Thanks for posting, makes me feel not alone and I'm really interested to hear people's responses. Wishing you well with the decisions, so hard knowing what is best and I can tie myself up knots with it.

[Gem43 in reply to Henley13]

Hi so great to 'meet you and know' someone else with a mesh too. I totally agree about tieing yourself up in knots when trying to make decisions! I had to have classical c sections (from my belly button to my pubic bone because of endo on bladder) so that's where my mesh is. This worries me re another complication of surgery so Im keen to discuss this with the consultant although endo nurse was reassuring. I know they can do robotic surgery now. I've only recently been diagnosed with adenmyosis - this year and I have a sneaky feeling it's a new thing with me. I was advised to take a low dose of hrt because I was having potential perimenopause symptoms and I have since been told this could have made things worse so now not on it! I am now under Addenbrooks Endo Centre in Cambs so in good hands. Good luck with your journey and hopefully we'll stay in touch

[Henley13 in reply to Gem43]

Thanks for getting back to me and please stay in touch as your journey progresses. The mesh is been a worry for me too re complications of further surgery and adhesions but the gynaecologist does not seem concerned.

I'm also struggling with perimenopause symptoms and my gynaecologist gave the go ahead for very low dose oestrogen (after i had my mirena renewed) to see if it helps headaches, but I have put off trying it for the moment as I was concerned about making things worse. A new phase in managing endo/adeno which I'm trying to navigate!

I have had some benefit from accupuncture, if nothing else it makes me feel more balanced, but appreciate as it's not free it's not an option for everyone.

I'm under the John Radcliff in Oxford and their pain management service sounds really good (had an initial telephone consultation) so I'm looking forward to seeing how that progresses when I go in November.

All the best.

[Gem43 in reply to Henley13]

Our journeys sound very similar don't they! Acupuncture sounds good. I tried this also before I had my first baby and found it helped. Ive actually recently changed my diet too and I think that's helping pain wise. Cutting our red meat, much less caffeine and diary ,eating more berries, nuts and leafy greens etc. Ive been off my HRT patches about 6 or 7 weeks and not had any of the 'perimenopause' symptoms I was having before the HRT. I was also getting awful headaches. I had been advised that if I had decided to stay on HRT patches to take progesterone as well to avoid any recurrance of endo but I decided just to come off the HRT. Good luck in November!

[Henley13 in reply to Gem43]

Thank you! It has been very reassuring to hear from someone going through a similar journey. That's interesting about diet, I have been wondering about reducing dairy as this has also helped my sister.Good luck with your next step too.