Endo and fibroid issues

[MJD1712]

Hello all. No real question. Just needing to share as I'm a bit afraid of what's to come. Just had my second laparoscopy this week. Docs were unable to do anything at the time because one fibroid is so big (in the wall of my uterus) it's starting to squash everything. And lots of stage 4 endo....possibly around my bowels again. But they couldn't see properly because of the fibroid. Talk of a hysterectomy. Worried about bowel complications and possibility it may involve resection. Pouch of Douglas 'obliterated'. Fertility journey ended unsuccessfully, but hysterectomy seems so final. I'm 43 so was hoping for a few more years before menopause. I'm basically driving myself a bit nuts with all the things going round and round in my head. Any words of wisdom welcomed!

[Honeybeehappy]

Hi there. I hear you and am on a similar pathway. I was diagnosed in 2010 and from then, had 2 laparotomies for big endometriomas, and a few years later, had a laparoscopy for a hydrosalpinx and a clipped tube. We did fertility treatment for 7 years and tried the adoption route unsuccessfully for 4 years which was extremely harmful to us as result of a very broken and disgraceful social work system. Last week, I met my consultant and she was offering me a hysterectomy to address endometriosis, adenomyosis and fibroids. If feel it is very final too and it's amplified when not having children has not been a choice. I asked if I could have a sub-total hysterectomy instead but she advised that due to the wide spread state of endo (which means my pelvic anatomy is basically an utter mess) she would only do a total hysterectomy which I don't get. I've never had any issue in my cervix - it's all been ovaries and uterus problems. The other option she gave me was just the removal of ovaries. I'm really unsure what to do. I'll be 49 soon and will never have children obviously. The re-trauma of not being able to adopt has really triggered me in the middle of dealing with endometriosis. Getting a hysterectomy is massively psychological and I've not quite to got to grips with that. The crazy thing is, menopause is on the horizon for all of us women so none of the reproductive organs will have much of a job anymore anyway so I need to try and find the logic in my hesitancy and deal with my emotions. The waiting list timeline is 2-18 months so I have the time to think about all this whilst being on the waiting list. However, nature could have kicked in by the time of surgery and I'll have reached menopause normally. If that happens, I don't know if I'll bother with surgery.

[MJD1712 in reply to Honeybeehappy]

Omg you've certainly had a horrendous time. And you've completely echoed what I've been thinking and feeling. I'm so sorry to hear what an incredibly tough time you had with the adoption process too. People asked us....would you think about adoption? Like it's some quick and easy alternative to fertility treatment. We considered it carefully and were under no illusion that it was not an easy route. Eventually we concluded that we did not have the emotional energy after 10 years of trying to have a baby ourselves.As soon as the doc suggested a hysterectomy might be needed my mind has been in overdrive ever since. You're right. It's hugely psychological. Because it marks a complete end to one stage of your life and an earlier than imagined start to another stage. I also find it hugely unfair that now we've concluded our fertility journey and we are trying to make the best of it, that I have to be faced with these complex health issues. It feels like a real slap in the face.I really like your logical approach though....at the end of the day menopause is going to happen. Just possibly earlier than realised. Good luck with your journey, and thank you for getting in touch. If you ever want to get in touch again please feel free. X

[Honeybeehappy in reply to MJD1712]

Thanks for that. Over the past week, I've done some more reading and reflecting on the hysterectomy question. I've actually decided that I don't want it and would rather discuss the removal of the fibroids and the endometrioma. Just because our bodies have been wrecked by endo, and our fertility destroyed doesn't mean an automatic disposal of our organs as a matter of standard treatment (unless we want that obviously). Of course, where it's a daily pain battle, that's different. I don't have that and I can live with my dark endo passenger on most days. I didn't know that our ovaries still produce testosterone for 20 years after menopause and that other serious health risks can be introduced by having a hysterectomy. So for me, it has to be a balance between my daily coping with endo and adeno, against going down the road of very extreme surgical option. I'm going to write to the surgeon's secretary today and ask if I have alternative surgical options which are less extreme. Ideally, I'd like to remain intact with the removal of the big cyst and the fibroids. If she's not up for that, I'd like to contact my previous surgeon for a second opinion on how to approach things. If the cysts/fibroids can come out, I'd possibly consider time on Prostap with Tibilone add-back as I've had that before during the IVF years and could cope as long as I was on Tibilone. That may not be an option though. However, these options might just see me through all this until the day that everything eventually stops as it would naturally. Happy to chat again likewise. Good luck too. x

[MJD1712 in reply to Honeybeehappy]

Thank you for this. I agree if there are alternative options, they should be at least put on the table. I am sort of thinking that if a hysterectomywill solve my near daily issues It might be worth it. But need to do more research and work out what other options there might be. You lovely people have given me some interesting things to think about which is very much appreciated. Best of luck with your journey and I hope you get the info you need to get you to a good place xxx

[Honeybeehappy in reply to MJD1712]

Best of luck of luck too! x

[Bebe294]

I am sorry to hear this. I had similar situation if you looked my previous posts I explained. Finally I had a laparotomy last year to get rid of everything ( endo adeno 18 fibroids) and preserved my uterus for future transfer. It has to be a very skilled surgeon though. Not everyone can remove adenomyosis. But there are very good doctors for removing endo and fibroids even if you cannot find one to repair uterus fir adeno too.

If you want to preserve your uterus, I suggest asking your dr if you are a good candidate going on Triptorelin injections for 6 months and then do the surgery( similar to zoladex or Lupron but Lupron I had terrible side effects)

I had these injections 3 months before and 6 month after surgery. Be aware that going on these and specifically if they remove part of your ovaries you may still go into menopause but depends on the person you are young and if they dont remove ovaries you won’t go to menopause easily.

The gnrh is tough on mental health as well but still I got rid of those horrible pains and add back therapy helps with managing side effects. I see in this forum there are people managed to get pregnant only with gnrh therapy before ivf and not even doing a open abdominal surgery. I think it all depends on the skill of surgeon for doing laparoscopy and/or responding level to gnrh injections.

Hope this helps

Wish u all the best

[MJD1712 in reply to Bebe294]

Hi sorry for delay in replying. Firstly thank you for taking the time to respond to me. Its really appreciated. I'm sorry to hear you've had adeno on top of everything else to deal with.

Thank you for all of the helpful suggestions. I'm going to research what you've suggested. I think for me I just wasn't quite ready for menopause....so good to know if there are other options I can think about and consider. That said if it stops all my issues, maybe it's the lesser of 2 evils.

Thank you again and good luck to you on your journey xxx

[Bebe294]

Thanks very much good luck to you too.