Hi, I have an appointment next week and try to anticipate what might be coming and prepare questions. It will be my first gynae appointment but I already have the MRI scan results via my GP.
I have recto vaginal endo, my pouch of Douglas is full, I have DIE along my uterosacral ligaments, tethering to my bowel, both ovaries have large endometriomas (above 8 cm), my ovaries are stuck to each other, loads of adhesions and my uterus is flexed because of adhesions pulling it together.
Fertility is not a concern anymore (I have children and plan no more).
Pain wise I am not too bad and OTC medication is sufficient to control it.
Has anyone had similar and is happy to share what happened treatment or surgery wise?
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CurlyandConfused
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Hi curly and confused, Firstly wow Thats a lot but really good news that it doesn’t sound like your feeling too bad pain wise . I haven’t actually had either of the procedures you mentioned , can I ask what prompts you you ask about those in particular ?
I just keep reading about hysterectomies in relation to endo and it says it's of the used when the family is complete. I am in my 40s and won't need my uterus anymore and since it's all bent because if the adhesions and everything I wondered if that might be a suggestion.
As for oophorectomy - I had cyst removal before and have already lost a big part of one of the ovaries. Now I have a massive cyst in the other one, smaller one on the other side and several smaller endometriomas on top on both sides. So I guess my ovaries may be quite damaged anyways and there is not much to rescue.
I have had a hysterectomy but ovaries left in, I was 41, 4 yrs ago. I then went on to have further endo excised last year. It’s not a cure and even if u have ovaries removed it can still grow. The plus side is no more periods but still get the symptoms such as monthly pains and sore boobs etc. I now have a 3.5cm growth on ovaries but they are not keen to operate anymore, they have suggested the zoladex jab but I am not keen due to side effects. It’s never ending isn’t it x
Hi, glad you’re doing well on the pain level considering the amount of problems you have in you pelvic area. Unfortunately I’ve had both those surgeries, endo wasn’t kind to me, as well as making it impossible for me to have a family, I have suffered with pain for as long as I can remember. I’m 48 now, and waiting for yet another laparoscopy due to the pain (tho it’s not quite as bad as before) plus the bonus of no periods, all I can say is it’s definitely not a cure having surgery but everyone is different and some can have a better outcome. I hope what ever you decide, it’s whats right for you. Good luck. Big hug x
Hi. I'm in a similar state, and 49. Had diagnostic lap in Jan, and have had my follow up. With my age and the state of my insides, I assumed he was going to recommend whipping the lot out but, because I'm not in a lot of pain, he's 'not discussing further surgery' with me. He's mentioned 'an injection to put me in the menopause, with some add-back to help with the hot flushes'. Not fancying that TBH so planning on refusing at my appointment, next week.
You sound a bit like me - lots of endo but not too much pain. I am pretty sure my large endometriomas need to come out and the tethering is pulling my bowel inside and have bend it.
Will see what he says. Not too keen on a large OP so will see.
Sorry to hear about your situation. I have been struggling with similar issues and just had a full hysterectomy + oophorectomy a few days ago. I had my first lap 7 months ago to remove endometriomas, part of left ovary, tubes, severe endo and uterus ablation. 5 mths post surgery and I was in emergency from pain, ultrasound showed 5cm endometrioma had grown back. I couldn't believe it was so quickly! Surgeon suggested that I at least remove the cyst. He did give me the option of saving uterus and part of right ovary. I had the option of going on lupron/orlissa to mimic menopause. But I was reading that once you have the cysts, there's a high chance they will come back. And since my regrowth seemed so aggressive, I figured I would just get everything taken out instead of a temp fix of removing cyst or the drugs and risking a 3rd surgery. And I'm 49 so probably heading into menopause soon anyway. It's actually good that I chose the full hysterectomy. Once the surgeon went in, he told my husband it was terrible where he suspected the cyst ruptured or leaked- everything stuck together, endo everywhere, huge mess, he probably wouldn't have been able to save my uterus or ovary anyway. (So far my bladder and bowel are working fine so I'm glad that those weren't damaged by disease. I'm still waiting on my post op report) I was so scared prior to surgery, I still don't know how I'll react to the surgical menopause since it's only a few days, and of course I don't know if the endo will come back. But I think for the sake of my other organs and overall well being, that was the right choice that I made at that time. I can't imagine if I had waited too much longer and it caused damage to other organs. First 2 days after surgery was a bit rough cuz the surgery was so long and involved, but I'm doing better day by day and able to get around much better day 5. I think the anticipation was the worst part. Please msg me if you have any questions about surgery/recovery. Good luck to you in your process, I totally know how scary and overwhelming it all is. Up to the day of surgery I was still wondering if I was making the right choice to remove it all, but now I'm glad I did. You will make the right choice for yourself too. xx
Hi there, yes I had all the same as you have. I had my ovaries removed 4 years ago and kept asking for a hysterectomy but the doctor kept saying it wouldn’t help. 4 years later I’m 6 days post hysterectomy and feeling really good. It’s still to early to say whether it has worked but I’m very hopeful.As you say fertility isnt a problem so if you get offered it I would go for having it all removed. You will go into immediate menopause which I did 4 years ago but I think I was lucky and didn’t suffer too much but everyone is different.
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