Suspected Endometriosis - Laparoscopy all clear :(

[Charstar]

Hi Ladies,

I am currently recovering from a laparoscopy for suspected endometriosis only to be told they couldn't find any endometriosis or any reason for my pelvic pain.

When the consultant said they couldn't find any reason for my pain I burst into tears, I was expecting to wake up and be on the path of becoming pain free, not that this nightmare would be continuing.

The consultant said something about organs being close together and something about my maybe to do with my lower bowel and to get a follow up appointment with my gp. She asked why I was so upset and I explained that I thought I would wake and have answers but now I'm no better off then before. I asked whether my hormones could be causing my other symptoms and I'm pretty sure she said yes. (They need to rethink the process of telling you their findings when you're still drowsy from the aesthetic! I can't remember a thing!) I'm feeling so low about this whole experience and I don't know where to begin or who to turn to with having so many questions.

If I have all the symptoms of endometriosis, but no endometriosis was found, then what is the cause of all my pain? Is the consultant right and could It be be my bowels all along?

Or can a hormone imbalance be the cause of all my pelvic pain and all my other symptoms?Constant uterine cramps, lower back ache, pelvic pain on left, enlarged nodes in groin on left, heavy painful periods, irregular cycles, persistent vaginal thrush, pain and spotting after sex, snot like discharge after a bowel movement.

My bowels are still incredibly sore from the lap and am wondering if this is another sign leaning towards my pains being bowel related all along? I'm also starting to feel like this laparoscopy was so invasive and maybe for nothing and maybe I should have had a less invasive procedure like a hysteroscopy? Should I have had more extensive blood and hormonal tests first?

Any input or ideas would be greatly appreciated

C xx

Also, TTC 18 months, suffer from bad hormonal acne on chin, I had a raised lh to fsh ratio on a blood test but I have never had this discussed with a doctor as I happened to come across this myself when I asked for brief print out of my medical notes.

[Elwood]

Hiya, I can understand your frustrations and how upsetting it is to not have an answer. However now endo is ruled out you can push for more tests. Be firm with your doctor don't take no for an answer. I feel sad and pleased for you all at the same time, I wouldn't wish endo on anyone so I am glad they didn't find any but also sad as I do know how it feels to be in pain and have no answers, I really hope they find out what's causing your symptoms. There is a pelvic pain network on here too which may be helpful for you to speak to other people there who may be able to point you in the right direction to get a diagnosis.

Wishing you the best of luck and keep your chin up xxx

[Loopylooby]

I totally understand why you were upset. In 2008 I had a colonoscopy to check for ulcerative colitis/crohns which was clear. Consultant, GP and I all certain I had endo. Finally got a lap in 2010. When I woke up I was told lap was all clear and no endo. I sobbed and sobbed because I still didn't have any answers.

5 years on, and having been diagnosed with lupus, my consultant thinks I have endo. I'm still pretty sure I do too. I told him sure I'll have another lap but I'll bet it's clear!

He said that endo can be missed as some surgeons aren't specialist enough and don't look at the less common sites.

So I'll be booked in again soon but not holding my breath!

Thing to remember is don't discount endo altogether. Keep searching for answers but don't be afraid to ask them to reconsider if nothing else is diagnosed (and even if it is!).

Hope you are feeling better soon xxx

[Charstar in reply to Loopylooby]

Hi Ladies

Thanks for getting back to me. I am relieved they didn't find any endometriosis but feeling lost with still having no diagnosis and not knowing where to turn next. Im full of bitter sweet feeling at the moment. I've joined the pelvic pain network too so hopefully i can find some more support and help on there.

I've been reading lots about endo being missed and needing a specialist but I wouldn't know how to even approach that subject with my gp without coming out of there them thinking I'm a crazy lady. I'm sure I was in surgery for just over an hour so I'm thinking this would have been enough time if they were to find any?

I think I need to accept this is gonna be a much longer road to diagnois then I first thought and I've just got to carry on pushing for tests and answers.

Glad to hear you are on the right path loopylooby, I hope you get some more answers soon too

C

Xxx

[Hells83bells]

Hi hun I totally understand your frustrations. My 3rd lap they didn't find any endo. However my most recent one (number 4) they found a lot and the consultant thinks there Prob was some last time but they didn't find it. As for the consultant seeing u after the op, I had the same experience and then once more lucid spent all night mulling over questions I wished I had asked because he was so vague and I was so out of it. I wrote it on my feedback form when I left the hospital x

[Charstar]

Hi Hells83Bells. Were they specifically looking for endo on your 3rd lap? Im worried about pushing for a endo diagnosis when they have said no endo could be seen without coming across as a crazy lady. When the consultant said she couldn't find any reason for my pain I was so overwhelmed with emotion I couldn't think straight and didn't really ask any questions. I was upset and still drowsy and it's so silly of them to come and talk to you so soon afterwards. I have so many unanswered questions, it's so frustrating. X