Recently had a laparoscopy but found no endo or cause for pain, what next?

[EllieMc145]

Hi everyone,

I had an emergency diagnostic laparoscopy on 30th July 2020 and a Mirena coil fitted. My surgeon found no endometriosis or any cause for my physical pain, just that my bowel seemed a little full. The coil seems to have made things worse. I'm so lost and I don't know where to go from here.

To give a bit of context, I've had bad pelvic pain since I was around 10 years old, and it has always been related to my period and ovulation window. I'm now 18 and the pain has been getting increasingly worse to the point where I am blacking out and unable to work during my period and for a week or two leading up to it. I've been bounced around so many different doctors and tried so many different things I'm at a dead end. The doctors no longer seem interested in helping me, instead just telling me to get on and cope with it. I'm not sure where to go from here in terms of getting a second opinion or trying to get back to a somewhat normal routine of living.

Any advice would be greatly appreciated, thank you in advance!

[AngelMumma1711]

If at all possible, I would seek another opinion from a private consultant gynaecologist, preferably one who also has some expertise in colorectal issues too. Though the cost can be difficult to meet (around £200-300), a private consultant will be able to spend more time with you discussing the possibilities for a diagnosis and a treatment plan. Plus you get to choose who you see. The consultant will be able to review all your test results so far, and refer you back to the NHS for further tests/ treatment. From what you say, your quality of life is badly affected, and you're young to try to deal with all this. You might also try making a claim for personal independence payment (PIP); it's a slow process but it could help you pay for private treatment. Good luck xx

[EllieMc145 in reply to AngelMumma1711]

That would be a good idea, I'm going to look into some other options with private consultants if I can. I hadn't thought of PIP, I will definitely take a look at that. Thank you so much xx

[fayray]

I had this I was so constipated the pain was excruciating had key hole surgery where the only thing they found was a compacted bowel so try taking gentle laxatives first many years later diagnosed with Hashi

[EllieMc145 in reply to fayray]

I'm sorry to hear that, I hope you are doing better now xx

I did take some gentle laxatives after my laparoscopy which briefly helped, but it seemed like an odd thing for the surgeon to pick up on as I've never had issues with consipation before. I'm going to try and seek out a specialist who has some experience in this field

[Moon_maiden]

I’d agree about a second opinion, best with a gynaecologist who specialises in younger women and endo. Was the gynaecologist who did op a specialist or general gynae? They have been known to miss endo.

[EllieMc145 in reply to Moon_maiden]

Yeah, I'm going to look into other gynaecologists in the area. The gynaecologist who performed my op has an interest in menstrual disorders, so I assume she is somewhat of a specialist.

[Moon_maiden in reply to EllieMc145]

Let us know how you get on. If you can take someone with you, sounds silly but sometimes it can help in that you have an extra pair of ears and back up.

The consultant I saw yesterday is the hospital BSGE surgeon. I think there are NICE guidance for endo and younger women, not quite sure age group though.

[EllieMc145 in reply to Moon_maiden]

I will, thank you for your help I really appreciate it. I will look into surgeons and doctors with the BSGE to see if that will be of any help.

[Starley]

Hi there, were you taking the pill or any contraceptive injections before the lap? The reason I ask is that I’ve heard it can decrease the visibility of endometriosis when you go for the lap, making it more difficult to see and diagnose?

I could be totally wrong but it’s what I’ve been told.

I’m 23 and I struggle greatly with pain etc when on my period and ovulating. I’m waiting for my lap but won’t take any pills or injections until I’ve had the lap for that reason. Also, I’ve tried them last year and the year before and found them unhelpful, if anything they caused me more problems.

Definitely see for a second opinion, what you’re experiencing can’t be down to nothing, there must be a reason.

I hope you feel better soon 😊

[EllieMc145 in reply to Starley]

I took the mini pill for a couple of years when I was 11 to 13, but no other contraceptive pill, injection, or anything of the like since. The pill only caused me more problems so I came off of it, and never tried anything else due to severe migraines. I plan on looking for a specialist in my area so I can at least say I tried.

Thank you ^^ I hope you do as well, fingers crossed you get in for the lap soon xx