What the hell is wrong with me??!!!!! At my wits end and then some! Please help

[JellyBean21]

Hi Ladies,

I was just wondering if anyone has had any symptoms similar to my own, as three different GPs have each given me a different diagnosis.

I started my periods at 13 and they were extremely sporadic. I could go months without one and then gain up to a stone in weight during a period. The pain would be excruiciating, when it flared up it could bring me out in a cold sweat and i'd feel nauseated from the pain. My periods would be extremely heavy and could last upto 18 days and during this time I would suffer constant diarrhea. My GP told me I needed to wait a few years and they would settle. I waited until I was 18 and returned to the doctors. He checked my hormone levels and said I was fine, I could go on the pill but he wouldn't recommend it as I wasn't sexually active and so young.

At 20 I met my current partner, although I was always careful I became fed up of wondering if my period was late as usual or I was pregnant, so I decided to go on the Depo Jab.

Within two weeks of having the jab I started bleeding, I returned to the family planning clinic and was told this was normal. My weight and emotions started spinning out of control and me and my partner were miserable. I repeatedly visited the clinic who told me I needed more of the jab to stop the bleeding. I then went from having the jab every twelve weeks to every eight, after ten months of misery I came off the jab and tried Microgynon. Although this stopped me bleeding, my periods were still as excruciating as before. My emotions were uncontrollable, and I constantly felt sick and had diarrhea. I then tried Cerezatte and had the same problems.

I stopped taking birth control and had one heavy period in the following four months. Then I started bleeding again, this continued constantly for six months. In this time my GP finally sent me for more blood tests and an ultrasound. (This was after they curled their lip at me and told me I most likely had an STI, as I'd only had two partners, always been careful and still been tested this was very offensive.) Everything came back normal. To stop the bleeding I was prescribed Tranexamic acid and Mefenamic acid which didn't work. I then became desperate enough to try another form of birth control (Yasmine). Within a week the bleeding had stopped but I was miserable, I couldn't control my temper or my tear ducts, I was frightened to go anywhere with the diarrhea because the pain was so intense when I needed to go to the toilet.

I stopped the Yasmine after two months. Following that I have had one month with no bleeding followed by a 8 day period and then continued bleeding ever since.

I now have zero energy. I have felt tired all the time for over a year now but this is horrible. My head feels fogged up and I constantly feel dizzy. If I don't eat at regular intervals I go all shaky and can't function, i'm losing my hair (male pattern), I don't like eating out as it's a 50/50 chance as to whether i'll be in excruciating pain afterwards as I rush home for the toilet. Sex can be painful in certain positions and I have to hold my body in certain ways to avoid the pain. I lost my previous job because I had so much time off and when I was at work I was too tired to keep up. I'm now having the same problems at my new job and I am terrified of losing another job. I've had to withdraw from my university studies because I simply did not have the energy and have now had to lower my working hours. This has put more financial strain on my partner who doesn't seem to understand what is wrong with me. My family are fed up of my moaning and roll their eyes if I say im tired. I am continuously worried that I won't be able to have children or that I have something more serious (my nan died of cervical cancer at 36). After two years of doctors visits I have been told I have Policystic Ovaries by one GP, to be told that was nonsense by another GP and I have DUB instead. Another Doctor told me i'm just being silly and have hormonal problems. I have changed my GP practice and a new doctor has finally referred me to a Gyno but I am completely at my wits end. My relationship is crumbling, my studies are impossible and i'm going to lose my new job if I have any more time off! And everyone around me thiinks i'm just being lazy!

Please talk to me! I have no one to talk to and feel completely on my own.

[missteal]

Sounds very much like me. I've tried nearly every contraceptive pill/injection out there and they all make me constantly bleed. You have obviously never found a gp who knows much about gynea issues. I'm so glad you've finally been refered. They'll probably want to do a laparoscopy to try to get a definite diagnosis. Your symptoms sound very similar to mine and they found I had scarring, adhesions and a small patch of endo and I was diagnosed about 2 weeks ago with adenomyosis. I hope you get some answers from your consultation x

[JellyBean21 in reply to missteal]

Thanks Missteal,

I was wondering when they decide to do the Lap? Are there any other tests they did on you first besides bloods and an ultrasound?

Hope you're well xx

[susanamg in reply to missteal]

how where you diagnosed with adenomyosis? what tests?? thanks. x

[JellyBean21 in reply to susanamg]

I'm pretty sure adenomyosis can only be diagnosed with an MRI (you're lucky to get one on the NHS because they're so expensive). There's a message from DanielleWright below \/ thats got heaps of info on the condition xxxxx

[Squid]

Hi, this is also fairly similar to me, I can't write a proper reply at the moment but I promise I will, sending huge hugs, you're not alone, that's what we are here for xxxxx

[JellyBean21 in reply to Squid]

Thanks Squid xx

[daniellewright]

Hi,

It sounds like you may have adenomyosis.

Adenomyosis can be seen via colour doppler MRI youtube.com/watch?v=Mgz4waD...(Not working as expected?) The bright red and white 'throbbing' areas are the adenomyosis 'tumours' leaking blood into the walls of the uterus. Many clinicians STILL do not know what adenomyosis is, what the symptoms are or how to treat this cruel condition.

Women are still being put on anti-depressants and being given pain killers and/or hormones for something that needs to be removed.

That is why I set up the Adenomyosis Advice Association up and why the clinicians globally are using the site and are actively following the Facebook and Twitter pages to look at ALL of the feedback to understand why and how it comes about. For further info please feel free to visit adenomyosisadviceassociatio...

Danielle

[tinker241]

Sorry to hear that you went through hell and GPs are rubbish and at least you changed practice and now being referred and do hope they find something for you and it must be awful as previous message please make sure you top up your iron ok if you dont you will end up having no energy and sleeping all the time... ok ask your GP to do a blood test for your anaemic ok (BIG HUGS) xx

[JellyBean21]

Hey,

Thanks so much for the replies. It's nice to speak to people who believe me!

I've been tested for anaemia but apparently my Iron levels are normal.

I have kept a food diary and there is absolutely nothing that triggers the stomach pains and desperate rush to the toilet. I find that something that can upset my stomach one day, I can be completely fine with another day. The only thing I have noticed is that it is more frequent if i'm going through a stressful week/ month.

I have considered the Myrena coil but I wanted to get a diagnosis before I fixed the symptoms. I was worried that if I had the coil and fixed the symptoms it could leave a bigger underlying problem unnoticed. I've noticed that this was the case with many women and they did not realise anything serious was wrong until they were rushed into A&E years later. I've also decided that if it's going to be difficult to concieve I want to give it a shot as soon as I can.

Thanks so much.