Post lap, no endo

[kfryer]

Hi ladies,

I’m three weeks post lap and they found no endo. I’m finding it really difficult to come to terms with still and am in as much pain as ever!

I’ve had symptoms for a year to 18 months (not a long time compared to most, I know!) and this involves intense pain in my left side (between hip and torso), feeling hollow in that area, painful urination, frequent bowel movements with blood, very dark discharge and large clots, tiredness and general exhaustion, pain down thigh, weight gain and generally feeling rubbish!

Ive got the coil fitted (mirena) but this has been thoroughly checked and is in place etc.

I have had ultrasounds, blood and urine tests to no avail, so my GP suggested seeing an endo specialist who was convinced I had endo, but when he performed a lap he didn’t find anything (he also checked my surrounding organs and all seemed fine).

However, my symptoms continue and the only thing that reduces them is ibuprofen but only for an hour max before the pain returns.

If anyone has any idea what this might be I’d love some assurance - it’s so hard to stay positive when you’re in crippling pain with no idea of treatment or diagnosis! It’s really bringing me down and I feel like I’m going mad because there’s clearly not much to hang on to!

Thank you!!

[Mary-intussuception]

So Sorry to hear of your pain and suffering. Sorry can't really help.

Hope you can manage to get plenty of rest over the coming days and have a Peaceful Christmas. Probably you first. That's what's important now. xx🐥

ps

Were you investigated by a Colorectal Specialist first?

[Mary-intussuception in reply to Mary-intussuception]

Sorry - fed up of this phone writing what I didn't type!

That should read :

" Put you first. "

God Bless x🐥

[kfryer in reply to Mary-intussuception]

Thank you, this is such a lovely message! Have a lovely Christmas yourself x

[kfryer in reply to Mary-intussuception]

No I wasn’t investigated by a colorectal specialist - do you think this is a possible avenue to go down?

[Mary-intussuception in reply to kfryer]

Yes. Definitely:

" . . frequent bowel movements with blood . . "

1) Blood from back passage justifies Urgent referal to Colorectal Consultant for investigation.

2) Any change in bowel habit (frequent bowel movements) should be reported and investigated.

xx🐥

♡

[MaloushkaPat]

Hello,

I could have written your post myself! I've been in pain for between 18months to a year, I have the same symptoms except the blood with BM and I too have a Mirena fitted.

I had my lap on Thursday and they didn't find anything either and I am just simply hopeless and disheartened.

I have a follow-up in 8 weeks but I find it hard to not know anything for that whole time.

I hope you get some answers soon! Xx

[IndigoMoon1234]

Sorry to hear that you are feeling so poorly.

The same thing happened to me. I had a lap last August and they were no cysts present on the day. My gynaecologist dismissed me. He said I did not have endometriosis and he said the pain was not a gynae problem. He made me feel like a fraud, like I was making it up.

I saw another gynaecologist in May - an endo expert. He ordered a CT scan and it showed a 6cm Endometrioma on my ovary. My next appointment was in December to discuss surgery to remove it but in the meantime it had ruptured.

Don't give up hope. If you are in pain and experiencing other health problems, there is a cause. I read in a book once that pain is our friend. It let's us know when there is a problem.

Go back to your doctor. Be persistent. Ask for a referral to a new gynaecologist. Don't stop until you find out what is causing your problems.

Good luck and I hope they can find a way to help you.

A xx

[IndigoMoon1234]

Ps it may be worthwhile asking your GP if s/he would recommend a colonscopy in your case to rule out problems with the bowel.

[Scottoe]

Wondering if it could be Crohns or ulcerative colitis? Would have thought they would have done a colonoscopy because of the bleeding when you pass stools. Good luck with getting a diagnosis! And hope you have a lovely Christmas!! xx

[Hidden]

Could be adenoymyosis or something to do with the pelvic floor muscles, or both! I'm in the exact same situation and decided to get proactive and research as much, do as much pelvic floor therapy and what not so when I go back to the doctors they know I'm serious about it and what I've already tried. Good luck! x

[bakequeen]

i'm in exactly the same boat, have had all the endo symptoms for nearly 9 years, everyone was fairly sure i had endo but my lap in july was negative, it's crazy that not being diagnosed with an awful illness is so soul destroying but it really is! i struggled emotionally for a long time, felt like i looked stupid since nothing is apparently wrong me, but you can't beat yourself up just have to keep persisting and pushing for an answer, you know your own body and that something must be wrong!! just have to wait for them to find whatever it is!

since i had no endo found and removed i also had the mirena insterted, i know it is really successful for some people but so far i've had a terrible time and to be honest it's made me feel worse and stressed! the first 2 months were hell, soo much pain i nearly went to a&e several times, bloating like i've never seen, random bleeding, extended periods much more than normal. So i would say maybe your pain etc is from your body adjusting to it, it can take around 6 months before you see any improvement. I must say though that for me after 2 months it did improve a lot from the hell i had experienced, but now 5 months in i'm still having the same if not more issues than i had before it was inserted so perhaps it isn't right for me.

I've found naproxen to be quite a good painkiller if you want to consider that as an option to help you. And hot water bottle! I've also noticed a link between me drinking alcohol and the pain worsening since having the mirena but not sure if that's a common thing.

Try and stick it out as i've heard good results from some people, a girl i work with had no issues from the day it was inserted and she swears by it.

Hope you feel better soon, there's a lot of us on here you can always reach out to and it really has helped me to speak to people that actually understand and can share personal experiences, feel free to message me anytime xx