Negative gynae laparoscopy. eWhat now?

[TheOrchardKeeper]

Had a lap yesterday and have another thread floating around about the problems pre op. The problems all seem gynae related and yet they told me they found nothing. Yet leading up to the surgery I've been in on/off pain that involves sex, cramps, ability to walk, about like periods and lots of very low down abdomen pain plus occasional back and thigh pain.

Don't know what to do as they want me to now see a surgeon who specializes in bowels but Im not convinced it's bowel related as i have no symptoms but I will try that route.

I just don't know what to do. Been having on/off pain for a year now and it's increased so much in intensity lately that my quality of life is rubbish and Im desperate.

Any advice greatly appreciated.

[TheOrchardKeeper]

I have a minor cervical erosion which is soon to be treated but they told me that wouldn't cause this pain, as at least once a week the pain reaches an eight or above on a scale of one to ten.

Have had lots of gynae scans and all clear. Had no general scans for the rest of my torso though. For all I know it's an appendix issue as they didn't even look at that yesterday.

Just frustrated and confused

[AttilaTheMeerkat]

Not all gynaes are skilled enough to spot endometriosis if it is there. Some gynaes as well are far better than others.

Endo is also not readily picked up on scans.

I would seek a second opinion from another gynae and preferably one who actually has a) an interest in endometriosis and b) years of experience in dealing with such cases. Ask this person outright.

All the symptoms you describe particularly pain during sex are highly indicative of endometriosis being present. FWIW I have had all those symptoms too in the past (the thigh pain I had was due to some endo deposits being on the sciatic nerve) and in my case the cause was endometriosis.

//www.endo.org.uk is a good website.

You will need to be persistent in order to get answers.

[TheOrchardKeeper]

If they didn't look at any of my lower bowels then how do they know there isn't any endomitriosis on them?

The pain is all low down and sex/period related (or was, until it started hurting even more often and more intensely).

Thank you for the reply. I feel like im going mad and imagining it but I swear I've never felt pain like it, besides the middle of labour.

Just need to be persistent and try to stay strong.

[TheOrchardKeeper]

I do know that there's a specialist twenty miles from me who does private and NHS so that's plan B after the gp and the general surgery team.

[TheOrchardKeeper]

Just checked out the link. Thank you Has some useful advice on it.

[TheOrchardKeeper]

Feel like a human balloon today. No shoulder pain though (but I am taking tramadol, Paracetemol and Ibuprofen)

[Willdoitinaminute]

I had lap in my late 20s to diagn same sort of pain but like you the gyni couldn't find anything. 10yrs later same gyni did another lap and was amazed that I wasn't in A & E every month due to extensive endo lesions and adhesions.
Early endo can be very painful but almost invisible. I was given copies of videos/dvd made of all my laps so that they could monitor endo. Thankfully 20yrs on and +++ treatment, I suffer virtually no pain.
Combination of surgery, Zoladex and 3 Mirenas means I can live my life. It would have been better if I'd been diagnosed earlier but then I probably would have had DC earlier and my lovely DS would not be with us.

[AttilaTheMeerkat]

"I do know that there's a specialist twenty miles from me who does private and NHS so that's plan B after the gp and the general surgery team"

I would actually make your current Plan B your Plan A, GP and general surgery team may not be of any long term use now. Many GPs as well are not up to speed information wise on many aspects of such gynaecological problems.

They did not look at my bowels because the endo was not actually cited there; it was all in the uterine cavity in my case. My guess is that in your case the surgeon missed it. I found my own labour pains to be not as severe as endometriosis related pain; mild ie not chronic version of the disease can cause great pain. It is when endometriosis becomes more chronic in nature that the pain levels subside.

It takes a woman on average around 7 years to be finally diagnosed with endo.

I would not want anyone to suffer with this as I did for years in ignorance from myself, my mum (who also had no idea what was wrong with me) and medical people. You need and deserve proper answers; I'd be certainly travelling the 20 miles to see that specialist particularly if the GP can refer you to this person.

[TheOrchardKeeper]

Thank you Attila. It's hard when everyone including family is telling you to do the same thing but it feels like it's totally the wrong direction.

There have been moments this last month or two where I was doubled over or rocking on all fours to help and couldn't believe I was conscious as it hurt so bad. Im still pretty shocked they found nothing down there. But it is what it is and I'll just have to push. My quality of life is awful atm from this and it can't drag on for months. I just don't have that much energy left

Sorry you both suffered like that btw. It's a living nightmare

[TheOrchardKeeper]

Everyone has decided that as the operation showed nothing that's it. It's not gynae related, despite all the symptoms being womb related/vagina related. When she gave me my surgery results I asked why sex was painful during and after if there's no obvious cause and the Dr just said it's one of those things. But nothing obvious has changed. It didn't used to hurt though and now we can rarely have sex without it being painful towards the end and after. And it's not the cervical erosion as that just stings a bit if it's irritated and is a very different pain. Im having a colposcoscopy to fix it at the end of the month too anyway.

[TheOrchardKeeper]

The new pain during sex feels much deeper and like it's coming from the top of my womb, or that sort of area rather than the vagina or cervix

[TheOrchardKeeper]

(and excuse the rant/out poor. Im holding a lot in atm in RL and trying to keep it together as it's so draining).

[TheOrchardKeeper]

*outpour

Goddam the tramadol haze

[AttilaTheMeerkat]

"When she gave me my surgery results I asked why sex was painful during and after if there's no obvious cause and the Dr just said it's one of those things"

My bottom its just one of those things, she writes snorting with derision.
I bet you the doctor would not put up with it and you should not be expected to either.

Its not just one of those things and it cannot be accepted (I realise you are not just blithely accepting it). The above in itself is a red flag indicator for endometriosis being present!. Even the NHS choices website flags up endometriosis as a possible cause.

BTW I also told off one male GP once who dared to tell me that endometriosis was not common, I replied that well actually its the second most common gynae problem seen in women after fibroids.

I also doubt whether your upcoming colposcopy will have any real effect but it can be used to investigate unexplained pelvic pain.

[TheOrchardKeeper]

It'll be nice to stop bleeding everything we have sex. That's the only thing wrong with it. It only stings if we do a specific position so we just avoid it. But I get a deep, contraction/period like pain after sex which can vary between just uncomfortable to pretty painful. I know it's not normal. Just can't believe how much you have to fight to be believed and treated for this stuff. It's insane that they leave you in such a state really.

[TheOrchardKeeper]

*every time

oops.

Thank you Attila. Helps to even have one person who is taking you seriously. I know my body and I could draw on with a pen exactly where I get the pain etc. Trying to focus on the long road ahead so im not disheartened but easier said than done!

[TheOrchardKeeper]

first bowel movement post op is proving difficult. Think one is coming and my lower tummy is agony. Thanks for the warning Dr

Feel so faint.

[TheOrchardKeeper]

Or not. Managed to do 'something' and still agony, even with the tramadol, ibuprofen and paracetemol. God this had better pass soon.

[TheOrchardKeeper]

The incisions don't hurt that much anymore but I can't believe how painful my lower tummy is. Was lucky enough not to get much shoulder/gas pain but didn't expect to be in this much pain down there seeing as they didn't remove anything. Must be from all the rummaging around.

[TheOrchardKeeper]

(going to the gp tomorrow to ask for a direct referral. Will take my pain diary and dp who has seen how bad it can get etc. Hopefully that works).

[tak1ngchances]

Orchard are you on the NHS or seeing a consultant privately?
I know this should not be the case but my endo was completely ignored by the NHS, it was only when I went to see a private consultant that I got any answers. I see someone who specialises in endometriosis.

I think a consultation is around £200, you could see someone privately with you lap rests and pain diary and ask them what further investigations they would recommend.

Then go back to the NHS and insist on having them done. I think you should have had a hysteroscopy as well for a good thorough look inside your uterus as well as the lap. It sounds like the lap needed to be more extensive also.

I really feel for you, there is nothing worse than getting no answers. Take loads of pain meds today and be super kind to yourself. You will get an understanding of this and you will feel better. X

[TheOrchardKeeper]

I might try that route if needs be. I thought they'd have a good look all over with the lap as in the pre op they said they'd check my lower bowel and appendix too but they didn't. Just the reproductive bits.

Thank you.

[TheOrchardKeeper]

Im on nhs.