Laparoscopy and No Endo found. Really need any advice on what to do next?

[Bobo27]

Since the age of 11 when I first started getting periods I was absolutely floored for at least 3 days every month with pain. In the beginning it used to be just the crippling pain every month to the point that I would fear my next period. Sounds dramatic but honestly I thought I would die from the pain.

As I got older other symptoms took effect like bowel issues, fatigue, anaemia and a B12 deficiency that seemed to come out of no where. I would be in pain almost every day at that point. My doctor had given me ponstan (mefac) as well as a clotting tablet to lower the amount of blood. So at 17 I decided to go to a gynaecologist just to be given the pill which didn’t work, I vomited every day and my mood was awful, I tried 3 separate pills after that which also did not work.

Later I changed doctor who decided this was not normal and sent me to a maternity and gynae hospital. They did a hysteroscopy and D&C along with insertion of the coil. After the pain got worse and a cyst formed, multiple trips to A&E confirmed this but told me that the cyst should not be causing this amount of pain. The nurses suggested endometriosis, I had heard of it before as family members suffered with it.

So my follow up appointment I pushed for a laparoscopy which I had just yesterday.

The original doctor who is a specialist in this area who I was supposed to have (who I have never met) did not perform the surgery. Instead another doctor who I did not know performed it. I came out with just two incisions and found out on my file they had written, “laparoscopy with cystoscopy” I had to tell him that it was supposed to be for investigation of endo to which he scribbled at the end of the page “treatment of endometriosis”. Even though the cyst I had had leaked and essentially dissolved before then. When I woke up he told me more about the cyst than the endo which he told me they did not find any. I got upset and he then told me that some people just get bad periods and that’s my pain either that or look into IBS. I asked him about the possibility of IBS affecting my periods to which he paused and said “maybe”, he got paged and then said he had to run leaving me confused and upset.

Sorry about the long post but I really am so confused. I feel like I’m at a dead end. All my symptoms pointed to endometriosis yet nothing showed up. I am only 19 so maybe it’s my age but I don’t understand. The pain post procedure was nothing compared to my usual period pain. I’m honestly very lost and need advice, maybe this has happened to someone else?

I’d really appreciate any advice, thank you.

[Catness]

Hey, I’m so sorry that you’ve had such a set back, that must of been really tough to hear.

IF the person performing the operation wasn’t a specialist there is a chance they missed it. There are a number of ladies on here that have only been diagnosed on their second lap so don’t lose all hope yet. I’m not sure where you’re based but it may be worth considering paying to see a specialist endo consultant to talk through this and see what they have to say? Someone with a level of expertise that a usual gynaecologist doesn’t have.

Also have you heard of adenomyosis? It’s similar but a separate disease to endometriosis. A lot of your symptoms sound very similar to mine and although I have both much of the heavy bleeding etc. was actually caused by the adenomyoisis.

I hope you get some answers soon and hang in there. Also don’t listen to that BS that it’s IBS - that kind of outdated thinking is why so many people are suffering. You may need to push to be heard and to get a diagnosis but sometimes it’s necessary. Best of luck xxxxxxx

[Bobo27 in reply to Catness]

I have actually heard of andenomyosis, a family member has that too, I never thought they presented the same symptoms so I’ll look into it thank you! I’ll keep pushing, I’ve changed over to private healthcare to see the specialist. Thank you so much for your reply, it really helps hearing others advice. Thank you xxxx

[danijonez]

Hey I also had my lap in February and they didn’t find endometriosis despite all my symptoms. I still believe I have it, as my surgeon wasn’t an endo specialist and I was taking the pill at that time so it wasn’t all flared up either. They did diagnose me with pelvic congestion though, that causes so many symptoms like endometriosis as well, might be worth having a read about it. It’s basically large veins in the pelvis where the blood doesn’t flow properly x

[Bobo27 in reply to danijonez]

I’ll definitely look into it, still going to try to see the specialist but definitely worth looking into I didn’t even know about that. Thank you xx

[aaleyah786]

Hi i couldnt read and run, im 8 days post lap. They also told me no endo found but i do have scar tissue around appendix. Strange really as ive never had surgery or any infections.

Im still convinved that endo was missed.

Im clueless as to what happened in surgery as specialist couldnt speak to me in recovery as i was screaming out in pain.

I did speak to him on phone were he told me about scar tissue but idont recall much of the call as i was that drugged up.

I now have to wait 7 weeks for a follow up to fully find out what the hell is going on inside me.

Dont give up on your gut feeling if you think it is endo. We know our bodys better then any doctor.

Here if u need a chat xx