Laparoscopy showed no endo what next?

[ellydan]

Please help I have been suffering for what I and the doctors thought was endo for the last 10 months. I had a laparoscopy on Tuesday last week the surgeon informed me that no endometriosis was found and that I didn't need a follow up appointment. I know this is supposed to be good news but I am very upset I am in constant pain with still no explanation and dont know where to go next. The pain seems to have escalated since the lap and I feel I have no where to turn

[Tboag]

Go back to your Gp, you do need a follow up appointment with someone, the pain must be coming from somewhere, have you had ultrasound checking kidney and bladder ect.

Don't just expect what they say, was it a endo specialist that did lap, I've heard on here about ladies going for a second lap and it being found, (minimal)

Good luck x

[ellydan in reply to Tboag]

It was at the RVI I am not sure if they are endo specialists but the surgeon seem pretty sure they was no endo.The pain is keeping me awake at night and I am epileptic so this is triggering my seizures I feel so disheartened. Thank you so much for taking the time to reply and I will book an appointment with my gp xx

[gemp54]

Hi, I'm afraid I probably cant help as I'm still having my problems looked into myself and haven't got an answer but I didn't want to tea and run. Out of interest what type of pain are you having? I've had irregular periods, period type cramping and horrible back/hip/pelvic pain on and off for about 8 months now. I'm currently constantly bleeding and only norethesterone seems to stop it. I suspect endometriosis but the doctors are still insisting on putting me through tests for absolutely everything else first so its a long slow process. What other symptoms are you having because I've been tested for just about everything under the sun so maybe my experience with that could help suggest a new direction to look in?! X

[ellydan in reply to gemp54]

Pelvic and groin pain like a pressure and sometimes a severe stabbing pain much worse around my period however now there the majority of the time sometimes its so severe I am doubled over the pain also travels down my legs. I have been given cerasette to regulate my periods which has controlled the bleeding but not the pain. It is awful waiting for answers I hope you get some soon thank you for replying x

[gemp54 in reply to ellydan]

Hmmm, sounds like the same sort of pain I'm getting. It almost feels like a burning kind of pain in the joints. I was trying a progesterone only pill but the other side effects I was getting just didn't make it worth sticking with so I've now been advised to come off it and see if my body will stop the bleeding naturally anyway. I'm also going in for blood tests to check various hormones, thyroid etc on Thursday so maybe that will explain something for me. I dont know if it will help you but I find heat helps my pain so I've just ordered a self heating magnetic lower lumbar waist support belt from ebay. Its supposed to warm the area its over and i guess its easier than permanently walking around trying to strap hot water bottles to me! Xx

[ellydan in reply to gemp54]

Thanks I will look on ebay I have been buying heat pads for when I am managing to get to work but it works out expensive good luck and keep me updated xx

[Tboag]

What other tests have you had, ?

[ellydan in reply to Tboag]

Just a pelvic ultrasound nothing else xx

[ellydan]

Thank you I will have a look xx

[ellydan]

Thank you I will mention this to my gp hopefully I can get a second opinnion

[Brownlow in reply to ellydan]

Go to bsge.org.uk/ec-BSGE-accredi... to check if you were seen by an endo specialist or not. Either way, demand referral for a second opinion as Lindle recommended.

[Lil_Me]

I'm in exactly the same situation as you unfortunately. I had my lap on Wednesday and was told no endo and no follow up. They took pictures during the surgery and allowed me to take photos on my phone of the pictures which I showed a Dr on an endo facebook group and he confirmed that he couldn't see anything obvious so I'm now satisfied that they were right.

I was told to go back to my GP and ask for a referral to other teams such as bowels and if they don't find anything then pain clinic to just manage my pain. It's incredibly disheartening to be discharged from the gynae care without any answers just because they've ruled out one condition

On facebook I've been told to look into Adenomyosis as that has similar symptoms, and speak to an endocrinologist as it might be hormone related. The Dr at the hospital had no response when I pointed out that it was unlikely that my bowels were causing vaginal bleeding but there we go. He fulfilled his task of the day and screw the patient as a person (still feeling bitter).

So like you I've made an appointment with the GP. Since my referral to the hospital 8 months ago I've moved house so new GP, she says in her blurb she has an interest in women's health but she's part time so not seeing her until the 4th. I'd be interested to hear how you get on with yours! Good luck x

[ellydan]

Thank you so much for replying I have also made an appointment with my gp but cant get one till the 17th let me know how you get on I undersrand how disheartened you feel xx

[Lil_Me]

Thanks for your reply. I have done lots of research so I was seen at a BSGE accredited hospital with an excision specialist, however I was seen by the regular gynae team. I was reassured by the consultant who agreed to the lap as she wrote on the paperwork that they would excise anything they found but it wasn't until the day of the op that I discovered that she wasn't actually doing the op herself and the person who was would cauterise anything. I told them in advance that I didn't want that and I'm dismayed by the lack of continuity in my care. I've never seen the same Dr twice!!

No biopsies were taken and whilst you may think it's ludicrous for a Dr on facebook to give his opinion on the pictures I do highly value his opinion as an expert. He said that if there is any endo then it's minimal and not invasive and I agree from seeing the pictures myself. That's not to say that neither of them have missed anything of course. On the plus side because they didn't do anything at all I've recovered really well! Silver lining

Am I right in thinking that you're of a similar experience with no obvious endo only confirmed with a biopsy or do you have other more visible endo too? I have cramps most days, sharper pain around my tailbone and left ovary and much worse pain on my period. Coupled with regular spotting that they only controlled with the coil and Norethisterone. Throw in some fatigue for good measure and you've got me!

I've heard nothing but good about your consultant, I wish I could afford to see him! I have considered going straight to the private consultant who heads up the NHS BSGE hospital and seeking his opinion, it would cost a few hundred but I could afford that thankfully.

In my case I got the mirena about 9 months before my symptoms got worse and so there is a chance that that is the problem, so my next step is to take that out and see if things get worse when I allow my oestrogen to increase. Amusingly I have to have a telephone appointment with the Dr before they will make an appointment to take it out, not exactly keeping with doing what I want haha. Wow this got long quick, sorry for hijacking x

[Lil_Me]

So you're saying that the OP should seek a second opinion from a specialist, but it's ok for me to trust a general gynaecologist because you've second guessed why I was recommended the coil and decided that my symptoms are normal??

I feel as though I've annoyed you because I trust a world renowned endometriosis specialist to give me his opinion. And that is all it was, an opinion accompanied by a caveat, it wasn't a diagnosis! So feel free to look into whether you think it's against the UK GPs code of conduct but it's entirely irrelevant in my situation.

So you'll have to forgive me for completely ignoring your uninformed advice because you know nothing of my situation.