Feeling hopeless about diagnosis

[Bobo27]

I know I had posted about this a while ago, but to be honest I was just out of the laparoscopy and just upset and not thinking right.

Anyways, I had pain with my periods ever since I got them basically (age 11). Always crippled every month for at least 3 days. Missed school, family gatherings and basically anything that happened to fall around that time.

I’ve battled to try and get an answer only to be given cocktails of meds like painkillers and clotting tablets. They got me through most of the pain but I would always still feel a dull pain there and honestly feel very out of it in general.

So at 17 I begged for something else preferably a diagnosis. Instead they said no and gave me the coil. I developed trouble with that but it seemed to be just settling. I was getting another type of pain with it that was absolutely crippling. I went to A&E multiple times only for them to tell me to get on with it as there was nothing wrong.

I insisted that something was off. One day I decided not to leave until I was properly checked at my follow up appointments. That was when they found a 5cm cyst on my ovary. So since then I do not trust them.

I eventually got a lap after begging for ages. The only reason they did it was to get rid of the cyst. They said they would look for endo too while they were there. On the morning of my lap the surgeon only thought it was for a cyst as that was the only thing written on my file (by then the cyst had leaked). He quickly scribbled “treatment of endo” and then I went into theatre. When I came out I only had two incisions. One in my bellybutton and one in where the cyst was on my left ovary. He said that he checked for endo and they couldn’t see any. So I asked where to go from there and he told me to go back to my GP and look into IBS. So I asked him would that cause my painful and heavy periods to which he said “maybe” and then left.

I have gotten no word on any biopsy or if there were even any taken. I have gotten a letter for my follow up appointment which is in September (my lap was in April). I was told I would be seen in 6 to 8 weeks max. When my GP got the notes back he said they told him nothing really. I hadn’t even gotten the endo specialist.

My family seem to be giving up on this whole thing. It makes me feel as though it’s all in my head yet at the same time I feel as though my laparoscopy wasn’t done right. Where are the Biopsies? Why is my appointment so far away? Maybe the coil had suppressed it?

I suppose all I really need to know is this normal? Should I just accept what they said and put it down to IBS? I’m just losing hope on the whole matter. I am still in pain everyday, my period was worse since the lap, probably the worst it’s been since I was younger. I just don’t understand how this is normal?

Please let me know if this has happened to anyone else or at least if this is normal practice?

Sorry for the long post Xx

[Starry]

B8g hugs. My heart goes out to you at the medical indifference that you have been fighting.

I dont believe ibs causes mentrual issues, though i dont suffer it.

According to the new Nice guidelines you're meant to have a surgeon with a minimum of a registered special interest in endo, due to its varied appearance.

I had my diagnosis lap at a bsge with only 2 ports so i dont think that in itself is necessarily an indicator, its more about which rig they use.

There is i believe in the guidelines also a list of all the places that should be checked including ones like utero sacral ligaments, puch of douglas etc so you can as a next step ask your surgeon's secretary for your operation notes (to be done 1 week after surgery) and then do follow up questions. Endo laps dont seem to take biopsies as a rule, unless a growth is found.

One other thought. If your problems are uterine there is a similar disease to endo called adenomyosis which is effectively endo growing inside the muscle wall layer of the womb. It can often cause pelvic pain and heavy periods. Diagnosis is I think by hysteroscopy and biopsy but I believe is very difficult to diagnose definitively as its a bit of a lottery whether a diseased spot is actually found with a biopsy probe.

Hope some of this is of some use.

Thinking of you Xxxx

[Bobo27 in reply to Starry]

Thank you it does actually help a lot 💕 I didn’t know most of this stuff as I wasn’t really told anything, I will definitely bring it up with them. I have heard of adenomyosis before I wasn’t sure what it really was but I will look into it thank you for your reply it really helps Xxx