Suspected Endometriosis - Laparoscopy 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.

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Have you looked into poly cystic ovarian syndrome? I know that is some how related to hormone ratios. Worth looking at it. Hope you feel better soon. Xx

[PPSN_JudyB Pelvic Pain Support Netwo]

HI C,

Did you have an ultrasound to look at the ovaries before the laparoscopy ? Have you tried anything to relieve the painful periods ?

It would be worth looking into the hormone issue: an endocrinologist if you can get to see one. Well done for asking for a print out of your medical notes, it's often the only way to get to the bottom of some of these issues.

When endometriosis isn't found, it quite often is the bowel that is responsible. It can be contorted causing IBS type symptoms. Do you have constipation ?

[Charstar in reply to PPSN_JudyB]

Hi Ladies,

Thanks for getting back to me. I've had ultrasounds on both my ovaries and nodes in groin and both came back clear. With just having the laparoscopy I would have thought PCOS would have been seen but I guess this could be something I could discuss with my gp. Nothing really helps with my pelvic pain or period pain, I've recently been on tramadol and also codeine but it's my hot water bottle that gives me most comfort.

I've never heard of an endocrinologist so I will look into that for sure. With my raised ratio and acne it's looking like a high possibility of a hormone imbalance.

I have more gyno symptoms than bowel so its still hard for me to think this isn't gyno related. I do suffer from the odd bout of diarrhea but that's really my only bowel symptom.

If my laparoscopy report shows no problems with my bowels at all then I really won't know where to go next!

C

Xxx

[Hidden]

I know exactly how you feel! It's rotten when you expect something to get answers and it doesn't.

Like another person, have you checked pcos? It's very common and many of the symptoms you explain are similar.

Also, ask for a referral to an endocrinologist as that may help.

It may be a little early but try and see the positive - you don't have endometriosis and that is a good thing. Move on quickly to see the next specialist who may help. Good luck and gentle hugs.

[sharelle]

Research 'congestive pelvic syndrome', it is basically varicose veins in the pelvis. It can only be seen by a scan where the vein is injected to show it up on the scan and then they get measured. The pain is lower abdo, above the pubic bone and radiates to your back and it gets worse as the day goes on especially after standing a lot, also causes bloated/swollen abdomen and is persitant but varying degrees of pain. Does this sound similar? I think I have it (seeing gynae Tuesday) and I describe it as someone shoving a knife up there (sorry to be crude!) but internal bruising and if you sit down too hard it is really painful. It can be resolved by simply blocking off the veins. Let me know if you think this is your issue.

[Hidden]

Hi there,

I'm afraid I don't have any answers for you, but I do think it is unacceptable for the gynae consultant to talk to you only immediately after the op/anaesthetic. I've just had a lap & Salpingectomy and the consultant has not offered me follow up either. On Monday I'm going to contact the consultant's secretary and formally request a follow-up appointment. If she says no then I am in my rights to request a second opinion. I have lots of questions and although I no longer need her 'to do' anything I will feel better if I have those questions answered. Seeing as though you still have pain, and no cause has been found (yet), then I strongly you recommend you request a follow-up appointment too. Don't let yourself be fobbed off. I've allowed myself to be fobbed off too many times and it's not ok for us to be treated like that. Good luck, and thanks for posting, it's helped me too xx

[Charstar]

Hi ladies,

Apologies for the delay in reply I'm still a little sore from the laparoscopy and have only just been able the to get back online.

RT66 - PCOS has been mentioned a few times on here, I thought with already having ultrasounds and the laparoscopy surely cysts would have been seen? Some of my symptoms definitely lead towards it, irregular periods, pelvic pain and quite severe acne of my chin. I've also always thought I've had excessive hair on my face (especially on the sides) and lower back but it is very fair though, not dark. With the raised lh to fsh ratio (which has never been discussed with me, and to be honest I don't really know what this means) and all of the above PCOS is something I'm going to have to discuss with my gp (he's not even my registered gp, I've been pulled pillar to post and he is the only one to have seemed concerned and wanting to help) It's obvious my hormones are out of whack so an endocrinologist must me by next step.

Sharelle - I had never heard of pelvic congestion syndrome and briefly did a bit of research and again I have quite a few of the symptoms. I read something about veins being involved with ovaries and am thinking surely they would have seen any issues with my veins during the laparoscopy? The way you have described where the pain is is exactly where I get mine, above the pubic bone but on the left and sometimes lower back and hip pain that definitely is a lot worse as the day goes on and by the evening I've had enough, some evenings I'm in tears. I've always described my pain as a constant dull ache but sometimes I feel pulling, stabbing and even pulsating. How did it go with your gynae? I hope you got some answers.

ljm2015- the aftercare was terrible, I only found out I had stitches when I changed my dressings, I had been under the impression glue plugs were going to be used. I didn't even know if they were dissolvable or not until I see a nurse yesterday. Did you manage to get your follow up appointment? I know exactly how you feel with having so many questions, I really do hope you get some of them answered soon. I've been fobbed off so many times before and now know I can't let that happen again. I've even been told by a female doctor that all my symptoms were pretty much normal and "it's just some things women get", so much for us girls sticking together ay.

Sorry if I've rambled on ladies and I really do appreciative all of your input, it's really helped. I have an appointment with my gp tomorrow morning and I am going to talk about all that you have mentioned and push for some referrals. I hope you all get your answers soon

C xxxx

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Hey I'm in the same situation as you! I had a lap in 2013 and endometriosis was found and removed, the symptoms returned last year and I had my second lap a few weeks ago and they didn't find any endo, scar tissue or anything else wrong with me. The surgeon/gyne team think that my symptoms are due to nerve damage/issues with the nerves, this could be true as I've responded fairly well to nerve blocking tablets.

It may be worth asking your GP to refer you to a pain management clinic? I was referred there and found that they could provide better medication plans and treatment options for me. I'd also ask your GP to put your on hormonal treatments/medication to try and help the imbalance. Hopefully this should help with any acne, bleeding etc. I'd also ask to see a gastro specialist about your bowel concerns too.

I hope this helps, good luck in getting the treatment you need x