PCOS / Endo / General gyne help please?

[SirBoobAlot]

Right - have had two lapraoscopies in the last year. First found a very large demoid cyst on my left ovary, along with a twisted Fallopian tube. Both ovaries have a number of cysts, PCOS confirmed with blood test shortly after.

Second lap was last week, they found some small adhesions, but no other symptoms of endo. So presumed that the adhesions were caused by last time (cyst ruptured).

So that should be fine, but the problem is my periods are fucking horrendous. The blood loss itself isn't too heavy, but the pain is worse than labor. I end up sobbing, very often throwing up, the pain down my legs is hell. It always starts about 36 hours before I bleed, and builds up.

On top of that, in those 36hrs, and the first day of my period, I am exhausted. Totally wiped out. I have CFS anyway, and can normally cope with flare ups, but for at least two days every month / six weeks, I can sleep all day, no problem. I get migraine pain during this time too, along with terrible diarrhea.

The psychological symptoms are just as debilitating. I feel suicidal the night before, always. It's now almost become one of the things I know is indicating I'm heading for a period, the fact that I am thinking of killing myself. I also get so angry, I don't trust myself. I've never done anything to hurt anyone but me, it does frighten me though. Worth saying I also have a mental health condition, so don't know how much this is influencing it, but even with very successful therapy in recent months, the night before still drives me to that place.

I don't know what to do now. I don't really want to go back and see my gyne, he must be sick of the sight of me. But I don't know what else to do. This level of pain cannot be normal. Is it PCOS related? Everyone tells me PCOS shouldn't hurt, just be a bit of a pain in the arse. So I don't know what is going on.

Every time I google my symptoms 'endo' is the first thing that comes up, but I've been told I haven't got it.

Any suggestions would be greatly appreciated.

Gosh, I don't know what to say. I have endo, and it's crap. VERY painful, lots of blood loss, and quite knackering.

It hides, did you know that? So not finding it isn't necessarily proof that you don't have it, just they've not confirmed that you do. I read somewhere that it typically takes 7yrs (for each confirmed sufferer), to be diagnosed. Yikes.

Does your gynae have a stated interest/specialism in endo? If not, could you be transferred to one that does?

What Hazel wrote.

I have both endo and PCOS and in my case the endometriosis was the primary and only source of period pain (when I did have a period that is because PCOS put paid to me having any sort of regular cycle).

Some gynaes are simply not skilled enough to recognise endo (it can hide in other uterine areas and it can also take many forms) when it is seen. You ideally need to be seen by a cons gynae who actually has both up to date knowledge of procedure as well as an interest in this disease. A second opinion is certainly warranted.

In the meantime I would suggest you keep a daily pain and symptom diary as this will also be helpful.

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

My periods used to be horrifically heavy - to the point that I would be dizzy with bloody loss. They seemed to settle down after I had my DS, though, and he only finished breastfeeding in October (I'm still producing milk) so I don't know whether they will build back up to that point again. I can't take hormonal contraceptives because of my mental illness.

It was actually my consultant who did the operation himself this time (if nothing else I can tell the difference with the minimal bruising!), he's very nice, and is a very highly regarded gynecologist. The nurse informed me he was ''like a pop star of gyne, people travel for miles to be under him'', which was one of the oddest sentences I've ever heard uttered by a HCP! Because he's so highly sought after, though, I'd then feel slightly ridiculous saying "I don't agree with you".

The period pains are like full on contractions. I get IBS type symptoms as well, and half the time feel like I have a water infection for a day or so. The leg pain is the most bothersome at the moment because my legs are crap anyway.

Thank you both for you help, Attila you've been wonderful in the past too when I've been confused by everything, I'm signed up to the endo newsletter, as figured it couldn't hurt (irony...) to be getting it, regardless of diagnosis.