End Of My Hope Rope

[malsmarie]

Hi ladies ; i am coming to the end of my hope rope and just have no idea what to do here.

i was diagnosed with Endo in 2022, spread to my colon, bowel, large and small intestine. Had a partial hysterectomy where they remove my left tube and ovary because it was so overcome by adhesions that it was causing internal bleeding.

have had 2 laperectomys since to remove golfball-grapefruit sized cysts. they grow back bigger and faster each time.

My ob here in the US is starting to talk full radical hysterectomy , but i’m 23 years old and want to carry my own children desperately.

ever since diagnosis, i have also been admitted to a psych ward for panic attacks related to pain… last night was spent in the ER because a cyst ruptured and it felt like every bone in my hip shattered all at once.

i dont know if i can handle this anymore. do i just say screw it and get a hysterectomy so i wont be in blinding pain everyday for the rest of my life? freeze my eggs?

or try a new doctor, maybe go to the center in UK, idk i’m drawing for straws.

[Better_1]

Hello Malsmarie,

This sounds similar to me at your age. I was living in the USA when I had my left ovary and tube removed due to a 12 cm chocolate cyst caused by endometriosis, conceived naturally soon after but miscarried, conceived again a few months later. My daughter was born in the Uk. I breastfed for 6 months but the pain returned when I stopped breastfeeding. Had various hormone treatments for several years. The endometriosis recurred in the remaining right ovary, spread to the ureter, appendix and deep endometriosis between the rectum and the vagina. I had further surgeries by some renowned surgeons in Europe. I still have my right ovary and uterus and now grandchildren.

If egg freezing had been an option I probably would have gone for it

Hang in there. Have you tried anything other than surgery ?

[endoTHENmesh]

I am sorry to hear of your plight. I can sympathize - as I have been there as well. It is not an easy decision, but at some point the day to day quality of life becomes so poor - it is not really a choice. My only regret is that I did not fight hard enough with the doctor to have the procedure done as I wanted it. I did not want my cervix removed, and I was willing to "risk" cancer. (BTW I think male doctors should have their testes removed after they have children - since they are "risking cancer". Right...). I regret it because the cuff that is left (in my case) lacks sensation (during sex) and took years to soften (scarring) enough to make sex fully comfortable.

I did find that I was NOT able to take estrogen replacement without the endo reoccurring, but I could use a small amount of estrogen cream to maintain the vaginal and uretheral tissues. I recommend that - at least for a year or two, since oral estrogen is likely to be more systemic and reactivate any remaining endo. I would also caution that your body has likely built up a lot of adhesions from all the internal bleeding (not sure how else to explain that) and then an extensive surgery like a radical hysterectomy. So while the ravages of monthly pain cycles end, there may be a bit more required. It may also take some myofascial massage of the abdomen to help release the adhesions and get your more mobile. Just plan on some PT and massage - it will help.

As far as children, it was always my fear that endo is genetic. I am the 4th woman and the 3rd generation with the same symptoms. And it seems that in my family (father's side - so passed to me by my Dad) each generation has been stricken earlier. I was crippled with pain by 19 (and in college - not fun). I spent my sophomore year injecting myself with Lupron daily, in order to put myself into a temporary menopause. It worked for a couple of years, but the endo came back with a vengeance a couple of years later.

As far as children go - I would hope you could find it in your heart to adopt a child in need if being a mother is critical in your life. I hope you can pour your love and care into that child. Or perhaps you can use a surrogate with your husband (to be?).

It is an awful choice to make at so tender and age, but you are not alone. My surgery was over 35 years ago. I wish I could say that there has been progress in curing endo, but I do not see it. I see the same treatments, just designed to hold off the inevitable. That said - I have been married for 38 years to the same man and we have a lovely life. Not the one I expected, but it has been richer in other ways.

As the song goes - you do not always get what you want, but you do get what you need. I wish you strength, comfort and the wisdom to know when it is time. It will be OK.

[GoldenPupLover]

check out Clear Passage physical therapy: clearpassage.com they have helped many women in your condition. They will assess you at no charge and let you know whether they feel they can help.

[GoldenPupLover]

i have to state I am a Director there. I am not trying to sell you anything. We have done wel for many with severe endo pain. No surgery, no drugs.

[Metoofloor]

Good bless you malsmarie. I'll be praying for you. Emanuel means God with us.