Newly diagnosed after a episodes of severe pain? Still don't really understand it all...

[Red727]

I ended up going to a gynecologist after having sudden severe episodes of pelvic pain 5 times in the last year. I recently had an MRI done and it showed probable endometriosis on both ovaries with one ovary enlarged and particularly bad and blocked fallopian tube. I am going for a laparoscopy in a month's time to try clear me up a bit and have a Mirena coil fitted.

The severe pelvic pain episodes I get every so often are really concerning to me. It's like sudden onset of horrific pain where my stomach swells I massively and I get hot/shakey can't walk or lie down or anything because of the excruciating pain. When it happens it normally subsides to the point where it's bearable within a couple of hours. No one has really been able to tell me why it's happening. The best guess I've gotten is because I have a number of endometriomas on my ovaries that they may be rupturing every so often. No one's really told me what I should do in these situations and whether I should be concerned when it does happen. I took myself to A&E last time in the hope they might check to see what's going on but they didn't even do a scan, just gave me pain killers and sent me home. Is this normal? I've spoken to my gynecologist didn't seem too concerned and was speaking like it's just part of the disease and there's no need to seek urgent medical treatment when it does happen.

I would love to hear if anyone experiences anything similar? I can deal with everything else but to be walking along the street one second and the next second to be bowled over in pain on the floor is just a really scary thing, especially because I can't predict when it will happen.

I'm also surprised I've been diagnosed from MRI alone as I thought you needed to have a laparoscopy first. I'm just wondering if it could be anything else, my doctor has never done a CA125 blood test on me and says it won't be anything but endo, but I don't get why they wouldn't double check? I assume biopsies will be done as part of the laparoscopy? The MRI showed evidence of endo in my pouch of Douglas too and I'm concerned about my fallopian tube appearing blocked on the mri, is this common? I have no idea what "grade" I'd be at, I assume this will all be determined after my surgery.

I'm just a bit lost and confused at the moment

[ricegirl]

Hi Red:

In my humble opinion, the best option to manage the pelvic pain associated with endometriosis is hormone suppression. The Mirena won't do that for you. I have tried every category of oral birth control for hormone suppression (since I was 14). They all did a fair job but the best hormone suppression to my endo pain is the quarterly shot of Depoprevera. This is the name of the drug in the US. I am now 50 and Mayo supports 5 more years with this drug as when I go off of it - - all hell breaks loose.

Some of my younger friends with painful endo have gone to physical therapists trained in pelvic pain relief. Perhaps try that if your lap surgery doesn't help the pain. Bottom line - get rid of the Mirena.

[Red727 in reply to ricegirl]

Thanks for the advice. It seems like it might be a good idea to try the Mirena first as it's supposedly helps for half of endo cases as far as I've seen. If it doesn't work as planned I will definitely bring up Depoprevera. Did your Mirena not help at all?

[ricegirl in reply to Red727]

No, it did not help me and it nicely offered scar tissue creation.

[vmagpie]

Hi,

I’m sorry you’re experiencing all this. I can’t be much help. I’m waiting for MRI results myself and dreading what they’re going to say at my next appointment. I’m undiagnosed but have a long history of symptoms and an added lump in my abdominal wall since my c-section two years ago.

Do you have a date for your lap?

I really wish you the best of luck and hope you get answers xx

[Red727 in reply to vmagpie]

Hey, I hope your MRI gives you some answers. It was horrible to know that there's definitely something going on when I got the MRI results but also a relief at the same time. Haven't got a date for my lap just yet but it should be soon as I'm doing it privately (I'm in the UK and the NHS GPs were just giving me IBS tablets which I refused to even try). Wish you all the best x

[Hidden]

Sorry to hear all this. Personally I feel it is wrong of them not to be investigating more, even if it gives you peace of mind. I was treated similarly - yet in the end I dug my heals in and went to A&E and said I wanted to go to gyno ward and have a scan and that I wasnt going home. They did a scan. It showed no change in the endometrioma but it helped psychologically so much. If that had not have happened I think I would have ended up suicidal from feeling so scared from what was happening internally with no care or investigations from them. If I were you I would demand a scan and really push for them to do more. It is not ok you should endure all this on your own and they are not being more proactive. I have only had problems this year which came out of the blue. Going private for the op so i can get it done quicker and get excision surgery by a good surgeon. Think the nhs treat endo badly as they dont prioritise or seem to care the longer they leave things the more likely complications and symptoms worsen.

[Red727 in reply to Hidden]

I agree, I was so out of it in pain the last time I went A&E that it was all just a blur. At that point it was not known I had endo and they brushed it off as a normal ruptured cyst. I really wish I pushed harder for a scan at the time. I've been seeing a gynecologist privately as I'm lucky enough to have health insurance through my work. Thing is I had an MRI a month before this most recent severe pain episode and an MRI a month after, and the blocked fallopian tube with the enlarged ovary was not there on the first MRI so something bad must have happened with the pain!

I'm going to have to start back up the conversations with my GP about going to see an NHS gynecologist because my health insurance will not cover chronic conditions like endo so I'm going to have to switch back to the NHS at some point. Now I've got evidence of my insides being a mess I hope they take me seriously this time!!

Hope you figure out a way to control your endo that works well for you and brings you out of pain xx

[vmagpie]

Hey I also went to a&e when I experienced severe pain (another school mum took me as I was doubled over on the school run)

When they tried to send me home with pain relief I told them I wouldn’t have come to a&e if I could manage with pain relief at home, I saw a junior gynaecologist and got an ultrasound done and it also sped up my gynaecologist appointment that my gp had requested previously by 2-3 months.

It’s well worth pressing for what you believe you need to get answers. Xx

[Red727 in reply to vmagpie]

Thanks for this. When it happens again I'll head straight to A&E and be much more persistent. I'm just so sad that I have to say "when" it happens again and not "if", it happens every couple of months

[vmagpie in reply to Red727]

I know it’s really hard to decide wether it’s an emergency or not and there is always the fear of being judged or dismissed, but if you can’t cope, what else can you do?

Luckily the dr in a&e said “we’re going to send you home with painkillers, are you happy with that?” Him asking that question gave me the courage to say no, I’m not happy and wouldn’t have come in if I could cope.

I’m still in the process and if it’s not endo then I’m totally stumped as to what’s going on. I’d been chasing my first mri results for 5 weeks before they told me I was booked for another one, that was 2 weeks ago and I’m getting anxious with all the waiting.

Fingers crossed for us both, this isn’t an easy ride x

[Red727 in reply to vmagpie]

All the best! I hope you get some answers soon xx

[Hidden]

Hi! I’ve just read your post and scarily, you sound so much like me. I know EXACTLY how you feel girl! the fear of going out and not knowing if you’re gonna end up in an embarrassing debilitating situation in public is not nice!

I recently had a lap after severe bouts of the same as you over the last probably 10 years now, ( few and far between) but all have ended in a&e and being fobbed off with no real diagnosis. I have been diagnosed with ‘old endometriosis’ on both ovaries, and I also have a blocked left Fallopian tube, I also had a large adhesion from a previous surgery..

I’m also shocked that you’ve been told via MRI of your diagnosis..

definitely push for answers because, my consultant was adamant she wasn’t going to find anything... and I find myself in a position now where these things need further attention. Xx

[Red727 in reply to Hidden]

It's a relief to hear I'm not the only one. I'm also confused about the diagnosis from MRI alone. I'm now wondering whether I can even trust it, but when I have my lap I hope I finally get some answers. It's also making me worry that I'm getting surgery when I might not necessarily need it. I don't know, it's all very confusing. I hope your lap bought you some relief.

[Hidden in reply to Red727]

I also went through those motions of thinking ‘is it necessary or not’ but, if certainly was! I went with my gut.. I knew something was wrong deep down.

It’s bought me piece of mind that I’m not actually crazy lol, but with it has come a lot more questions and problems I wasn’t expecting too x