choosing what kind of operation that best

[Panwendy]

Hi guys not sure if any one can help but even a bit of advice would be greatly appreciated. Ive had my MRI and its come back saying I have signs of deep infiltrating endometriosis and adenomyosis. I went to my appt the other day and I was told I can decide what surgery I would like to have for them to take out what they find, So I can have a hysterectomy and the leave in my ovaries so I don't go into the menopause or I can have a laparoscopy so they can cut out what they find. Ive also ad problems with my bowels and bladder since my symptoms are getting worse and have ended up with a prolapse, but they don't seem to think its anything to do with my endo. So now I am under urology also and might have to have another operation on top of my first one for my endometriosis. I had the pro stap injection a few months back and I didn't enjoy it one bit, I was anxious, moody, zero sex drive, vaginal dryness hot flushes morning noon ad night I had the lot, and I m still suffering from the hot flushes and over over sweating now and its driving me crazy. About the operation side of this has anyone of you been through or are with anyone who is dealing with the same thing? I really am not sure what operation will be best to have fo my endo so all suggestions will be great. Thanks in advance guys. Samantha x

[Lindle]

First of all are you being treated in a specialist endo centre?

[Panwendy in reply to Lindle]

yes I am being treated at an endo centre

[Lindle in reply to Panwendy]

Then it is worrying if they have given you a choice of a hysterectomy leaving the ovaries or a laparoscopy so they can cut out what they find. It isn't an either/or scenario. First and foremost endo centres are there to surgically excise endometriosis. A hysterectomy would only be carried out if you have unmanageable periods, perhaps from adenomyosis, and all endo must be excised at the same time. Are you in England and is your centre BSGE accredited?

[Knina in reply to Lindle]

Interesting... I was suggested hysterectomy with excision even though I am not dying of pain. I have one more option to try "menopausal" treatment, but i do not want it. It does not seem that mirena is helping much. I have very bad episodes of pain now and thenj. But I can manage it. I think the worst part for me is pain unpredictability. I am also on another medication to ease pelvic nerve pain that makes me nauseous every day for about 2 hours and completely killed my sex drive, which again affects me psychologically. PT does not work for me. I am not planning more kids. In another words, i think hysterectomy with excision might be right for me even though I do not have terrible pain. Am I wrong? Sorry, have so many thoughts right now. I am a bit lost.

[Knina]

It depends on many factors, such as if you want to have more kids, how bad is your pain, you state of mind. In anyway, if you decide on hysterectomy it should be performed along with excision.

[Bebe294]

Yes I had it all and got a super major laparotomy 6 months ago to remove Adeno, Endo, many fibroids and all pelvic adhesions.

I also was on Decapeptyl injections since 3 month before surgery until recently. I didnt want to on these injections bcuz I knew they r horrible but there was no choice if I wanted to get this surgery and not having a hysterectomy or even touching ovaries which I wNted definitely to preserve my uterus.

The surgery was very difficult but they did it and it was successful.

For GNRH there are horrible side effects but they r much better if you go on add back therapy. For me it only allowed to be started after 6 injections. Doc saw sth on my bowel which he thinks might be endo and he said the surgery is very complicated and not advised at this point.

So far things are good I need to wait to have 3-4 periods before going for SHG to check on uterus but the size of my womb got back to normal according to a recent ultrasound and all endo is gone for good for now.

I wanted to have my uterus in place as I want to have kids but One thing I learnt just within the last year is even with hysterectomy the endo might not go away and remain still and bothers with pain so just b careful with that make sure that’s the ladt option.

Also read it somewhere that after hysterectomy bcuz the location of uterus gets empty other organs might drop to the place and there might other issues arise as with bladder or lumbar or spine pain etc.

So honostly seemed to me its not as easy sth doctors tell us that is, the hysterectomy., specially if you are yonge and many years still to go

So being on these GnRH injections despite I had a very bad experience with Lupron 4 yrs ago, the decapeptyl was a breeze of ourse with add back kinda regular even I had my sex drives back without having any endo pain which felt super good after these many years of super heavy and painful periods.

I hope you can make the best decision for yourself just give it enought thought and research as you are doing right now.

Good luck

[RachaelNicole]

Hi I am in the same position as yourself. I have endo and adenmyosis. My specialist has left it in my hands to make a decision on if I should under go the surgery of removing my cysts or not.

It’s such a hard decision 😳