Horrible night,

[Keepy123]

I'm bleeding really bad again had about 2 days where I've not been bleeding also got really bad pains feels like someone is twisting my ovaries, been told my bowel is stuck to everything still not sure what this means, my lap was abandoned due to not been able to get cameras in, he couldn't get to c my ovaries or my tubes, so am abit worried, c my consultant on 18th oct to c what pan of action is. Was told by surgeon that I need a major operation and it would have to b open surgery, is the the adhesions or endo that making my bowel stick to everything xx

[hayls]

Hi

Sorry you are having such a tough time - sending you a bug hug x

Unfortunately for a lot of us the endo is really bad by the time we get a diagnostic lap and the surgeons find that its widespread, covering and sticking the organs in our pelvic cavity together. Adhesions are a normal part of our biology but endo often causes more adhesions to form around/from the ovaries and endo patches are super sticky which causes adhesions to stick and develop in ways that they wouldn't otherwise. Generally organs will be stuck together by adhesions but behind those adhesions will be patches of endo. Because of this for a lot of women their ovaries won't be "floating" around like they are supposed to be and instead will have stuck to a nearby organ, pelvic wall or pelvis and due to the proximity of the other organs in the pelvic cavity the uterus, tubes etc may also be stuck to nearby organs. If you look at a diagram of our insides you will see how close everything is together. Often this results in the uterus being attached to the bowel and pulling the bowel up from its normal position. Ovaries may also be stuck to the bowel or stuck elsewhere in your pelvis.

Unfortunately this "sticky" situation is the same for a lot of endo sufferers and the cause of a lot of pain. I had surgery in August to unstick my ovaries which were clamped down on my pelvis and extensive removal of endo including bladder and am having surgery next week to unstick and remove endo from my bowel and uterus. Fingers crossed this will resolve some of my problems for a little while.

I found that the not knowing and not having a clear treatment plan was a really anxious time but felt much better once I'd discussed everything with the specialists and had a plan. I hope your appointment goes well x

[Keepy123]

Thank u so much 4 ur reply, it is the not knowing that's the worst, I was still abit doped up when surgeon said I need major surgery, and didn't think to ask any questions, I wish I had done now, only 2 weeks to wait 4 my appointment with consultant, I've also been told that with the surgery there is a chance of me needing a bag, 4 a little time, it's so scary, but at the min I think I would do anything, a little 2 much info but the amount of blood I lost in the night. Is the worst I've ever bled, can't really get untouch with consultant as she is on holiday and don't think my doc will interfere, so just gonna have to wait the 2 weeks and hope the blood lost calms down, hope ur surgery goes well and thank u again 4 ur reply

[hayls]

Hi again

I often think that the doctors don't really understand the impact of giving us a "summary" when we are still half out of it from the anesthetic and then leaving us to dwell and worry about what they said until we get the follow-up appointment.

If at your follow up it looks like major surgery is the best option my advice would be to make sure you only have this surgery with a endo specialist and if on the Nhs that this is at an accredited endo centre, this will maximise the success of the surgery and reduce the risks. My original gynae said I risked a bag for a little while but transferred to endo and bowel specialist who specialise in this surgery and they think its only a very low risk - to the point that they wouldn't have even mentioned it if I hadn't asked. So you never know, it may not turn out as bad as you're fearing x

[Keepy123]

Thank u, i will discuss it all with my consultant when I go, maybe she will b able to put my mind at rest, it's only 2 week 2moz till I c her so not really that long xx

[Deb79]

Hello to you both. I am in a very similar situation. I had my laparoscopy on Monday and was told that my endo is so severe I would need further surgery to detach the bowel. I have my follow up appointment on Tuesday and wondered how you go about finding an endo specialist or whether it is an accredited centre? Any advice gratefully received.

Thank you x

[Juleyanne]

Having just got up this morning after once again waking with a horrible pinching pain in my right pelvis and bladder pain which I strongly believe is adhesions pulling on my bladder when its full and nerve related pain which also affects my bowel badly. This together with low back pain and hip pain. I twist and contort in bed with all this going on trying to stretch out the tight pinching feeling in my groin. Yes, I know all about adhesions related to endo! I have had laps and hysteroscopy to divide the adhesions and reduce endo deposits but due to close proximity to bowel they removed as much as they could which basically means 'almost all'. Where there are endo lesions there is inflammation, inflammation triggers release of a sticky substance which goes on to form adhesions which go on to stick organs together. It is a vicious cycle and horrendously painful and uncomfortable for the sufferer depending which organs are adhered and nerve pain.