Endometriosis and Ovarian Cysts

[thenewbornnanny]

So, my few years of bad pains but nothing major is coming to an end... on Sunday I was admitted to hospital with excrutiating pains and kept in for 2.5 days to have scans/pain management etc. Turns out I had a massive cyst on my right ovary, that then burst and the blood caused a reaction to my abdominal lining (such horrific pain!!!!) and almost as soon as it came (Sunday) it is gone (Wednesday)The hospital (a Dutch one) were great, if a little overenthusiastic about the ability of paracetamol to cure anything and everything. I'm now under orders to go on the pill (yay, weight gain and pychosis!) and come back to the Gyne clinic next month for more scans and a Plan of Action. I think I'll need another laser lap. I had a very detailed scan done in the IVF clinic at the hospital and my right ovary is stuck between the back of my uterus and my bowel, the Doc said it was immobile (??? does that mean it's stuck fast??? He hardly spoke any English to me at all, my only complaint aside from being force fed paracetamol every 4 hours and told it would work "soon"!!!)

Anyway, I feel fine now, just as they said I would, and I cannot believe I went from fine to excrutiating pain to fine again in 72 hours. I am now soooooo nervous about it happening again. I was seriously considering stopping breathing it hurt so badly. Has anyone else gone through something similar abroad? I have great health insurance and fabulous bosses who are eager for me to get this sorted, and have whatever time off I need. I'm just nervous about the language barrier, and the different approach to treatment here in the Netherlands. They are very anti pain meds, it literally took me crying and crying and passing out before I got given a teeny but of morphine, only to come round a few minutes later and cry again that it wasn't working!!!!! My boss (American) kicked up an almighty fuss on my behalf God bless her and got me Pethidine after 12 hours of pretty much non stop pain. I then slept til it wore off.

Anyway sorry for the ramble, I am still a bit shaken up by the experience and really anxious about the next steps. I can't believe it's back to hospitals and treatment again

I know the pain and yes youre not exagerating, it is as painful if not more than child birth.

I think you have endometriosis.

I had this month on month and finally after an internal scan (this picks up everything) diagnosed with a blood filled cyst on one ovary and endermetriosis on the other. IT was described to me as each month when you menstrate blood gushes down your tubes and comes away (period) however if you have endo it clings to these patches of inflammation thus causing the terrible pain.

I was taken in 10 days after the scan for a lapo and the area was burnt away...the cyst had already burst and dissolved away.

That was 3 months ago and touch wood no more pain each month.

You need to get this sorted as for me each month I had to go t bed and sleep through the pain for at least 24 hours each month...the next day it was as though it hadnt happened

Thanks for responding dietqueen, much appreciate it! Sorry to hear you have the same thing, it really is exhaustingly horrible.

I have been diagnosed already (10 years ago now) with Endo, and after 2 laser laps and a bunch of different pills and Zoladex it was pretty moderate pain and nothing too major for about the last 5 years. Back with a vengeance now though it would seem! At the internal scan I had on Monday it took the guy 15 minutes to find my right ovary (and during that time I started seriously thinking that it had exploded inside me causing the pain!) All my insides are "sticky" in that I can feel pulling sometimes when I stand up fast, or bend too much in one direction. They scan did not show big areas of endo though, just a handful of small spatterings. Ugh. Am just not ready for more hospital appointments and treatment and stuff. Nor am I ready to have such awful pain on a regular basis again either.

Sometimes I cannot believe that the pain from Endo is not treated as an emergency as often as it should be! When I have a bad period I end up in bed, practically passed out, my blood pressure goes so low I feel like I am floating. When I explained this to a Dr 10 years ago, he (yes HE hahahaha) said I needed to buck up and get on with my life like other women all over the world do!!!!!!! I should have sued him (or lamped him) LOL. Now I have been hospitalized with pain a few times and I am glad to see my medical records show quite clearly this is not a condition that can be dealt with by "bucking up".

Ok rant over. I have to start taking Yasmin for 3 months straight from next week. Am a little anxious about that because of weight gain and megabitchfromhell tendencies in the past from other pills. Wish me (and everyone in my vicinity) luck!

Sorry to hear about your experience newbornnanny. I have Endo too think you posted on the AIBU thread where my DH had gone away for the weekend and I had extremely painful period and some of the responses made me realise that unless you have Endo its very hard to imagine how bad the pain is.

It is certainly possible for the endo to work its way around everything. My cousin has a frozen pelvis where basically if they tried to remove any of the Endo then all the other bits would probably fall off too ( sorry not describing that properly but you know what I mean) Thankfully she has now had her menopause and is free of pain.

Good luck with the Yasmin, I went on Cerazette 5 weeks ago and have the joy of constant ( although thankfully now painless and hopefully reducing ) bleeding and general tiredness and spaciness, thankfully no weight gain yet though, think I have actually lost some through new nervous twitching.

Endo is a complete pain in the arse ( quite literally) roll on menopause I say.

thenewbornnanny

Fellow endo sufferer here; you have my utmost sympathies.

Not at all surprised unfortunately that you were previously diagnosed with endometriosis and this disease can come back with a vengeance. It will entail a further round of treatment; would think another lap is on the cards now. No drug treatment can touch adhesions once they are formed and would think you have these now as well.

Think the recent treatment you have had too has been nothing short of appalling and just shows the degree of ignorance some docs have re endo.

My counsel for what it is worth is to now go all out to find a decent gynae with a specialist interest in endometriosis (NOT a general gynae and you may have to see several before finding one you can actually work with) in the Netherlands where you are now living. Use the health insurance you have to its fullest extent.

Although it is a UK based website www.endo.org.uk is very helpful.

Thanks Attila, I have been given the name of a very good endo-specialist gynae here in Amsterdam, hopefully I can get an appointment soon!

I have been shocked by some attitudes towards endo, especially by those in the medical profession, from nurses right up to Consultants. I've had eye rolling, sighs, been told to "buck up"... but I've also had a nurse staying 5 hours past the end of their shift as I am throwing up, in and out of consciousness, and really unwell, and they have cared enough to stay and wait til I am stable. That nurse was a guy 4 years younger than me, who said if he based his profession on clock watching rather than patient caring he would not be a real nurse. I could have married him right there and then (after he changed out of his vomit covered scrubs first though LOL)

Anyway, I really appreciate hearing from other endo sufferers. It's a very isolating condition in that I don't like showing my vulnerability when I am in pain, and so when I end up in hospital I feel it's almost a personal failing, stupid I know. I just get embarassed about it.

This all sounds awful-ly familiar.

My wife suffers with Endo and it's hideous - she has to go to bed monthly, and just passes out with the pain. She's had a lap twice - one just before we conceived our first child, and will have probably have to do the same again if we want another.

Has anybody found they've picked up strange dietary intolerances? She can't eat wheat, dairy or caffeine any more - and like you've said above - feels like she should just 'buck up and get on with it' (I don 't think I've been very helpful here either) and basically guilts herself into frequent bouts of the blues.

Is there a group or something where sufferers et together to share - it seems like a pretty solitary existence?

endoboard.yuku.com/topic/8155

The endo UK site is fantastic....you must have a look. In particularly Mr Trehan's advice on removal b excision rather than laster.