About the real me! And a thank you to you... - Endometriosis UK

Endometriosis UK

70,734 members52,159 posts

About the real me! And a thank you to you all.

cejay-wiffen profile image
6 Replies

Where do I start. I started having joint pain when I was 13 which slowly got worse and spread as I got older to my knees and lower back. When I turned 16 I studied as a chef but unfortunately could not pursue a career in it as my back was so severe I was in agony all the time. By then I was 19 going in and out of hospital with stomach pains doctors just took my appendix out when it wasn't that that was wrong they diagnosed me with IBS and sent me home. By this time I was in so much pain with my back and tummy i also had several miscarrages I became depressed and began self harming. A little while on I started losing memory having seizures and passing out and also started hearing voices I went to a psychiatrist who diagnosed me with dissociative identity disorder (DID) used to be called multiple personality disorder. It was caused by a trauma I had when I was younger. By the time I was diagnosed with DID I was 23 I'm 25 now and still waiting for treatment. Then about 5 months ago I started getting severe tummy pains when I'm due on or when going to the toilet It also felt like my left ovary was aching all the time I went to the gp and got referred for a pelvic and trans vaginal scan. 10 days after that I got the results and informed there was a complex cyst on my left ovary and I need urgent blood tests done the next day. Then About 3 weeks ago Before I recieved these results I was rushed into hospital with unbearable tummy pains and vomiting. I was seen by a gyne dr in a&e where they did an ultrasound scan showing a 10 cm demoid cyst on my ovary and that I needed a lapascopic cystectomy the next day. The following day came and I walked to theatre at 7:30pm he told me the op would take about 1 hour. A fell asleep at 8 and woke up at 12:30am and all I found out that night was that they didn't take my ovary. The next day my surgeon came to talk to me and he told me the cyst grew 5cm over night so was a total of 15cm by the time he took it out. And that the op took 4 hours as he had found I have stage 5 (severe) endometriosis on both ovarys my womb and my diaphragm and that he lasered as much as he could but couldn't get it all. The way forward for me is prostap for 3 months so I am a very menopausal 25 year old lol. And I have to come to terms with the fact I have severe endo and severe DID and also the fact of I'm only young and I have a carer and i have no choice but to be on disability so life's a bit sucky at the moment but I tell you one thing you have all been amazing helping me with all my questions thank you so much everybody. Good luck and best wishes to you all. If any one has any questions about anything I've written please don't hesitate to ask. It does me good to talk lol.

Thanks again.

Xxx

Written by
cejay-wiffen profile image
cejay-wiffen
To view profiles and participate in discussions please or .
Read more about...
6 Replies
cejay-wiffen profile image
cejay-wiffen

I should also add along my journey I have had 5 miscarriages. X

lillyflower profile image
lillyflower

Hi, wow you have been through a lot and you should be so proud of yourself for dealing with all this over the years. I'm glad you can talk about how you feel and find this site helps. I've had one miscarage and that was bad enough so I really sympathise with you. I hope you are getting plenty of support from doctors, friends and family and I hope the hormones are helping with the pain. Thankyou for sharing your story and like you say it is good to talk and I know everytime I've posted something that just knowing someone is answering that understands how I feel is so comforting. I hope you are managing the DID too and although I can't relate to how this makes you feel I'm allways happy to chat if it helps even though I may not have any answers, allways happy to listen. I hope your having a good day x

cejay-wiffen profile image
cejay-wiffen in reply to lillyflower

Thanks for your comment I am dealing with DID the best I can I've had it for 2 years I have to wait 2 years for treatment and treatment will be about 5 years blimey lol it's a long time. I have just been diagnosed with endo so I don't know how to feel. Prostap is messing with my emotions I'm angry one minute and crying uncontrollably the next and the hot flushes my god the hot flushes talk about horrible lol. What treatment did you have? X

lillyflower profile image
lillyflower

That is a long time to wait, and I'm sure the hormones aren't helping. I have read about add back hrt which can help I'm sure others on here can help with advice on that but it doesn't sound nice. I had my lap 2 weeks ago so although I've had pains and symptoms which in the last year got gradually worse I've only just been officially diagnosed with endo which is what I expected. My shock was that along with lession joining things together they found my tubes are "grossely blocked " and I have hydrosapinx which is water in tubes. So I was told when I woke up I'd need tubes removed in another big op and therefore any hope of kids would be IVF if possible. I was an emotional wreck and in shock. I'm now waiting for my next appointment which is in May to find out more. The nurse reassured me the anesthetic can make you emotional but I've never felt such an emotional wreck it was a feeling of waves that came over me and the tears were uncontrolable! I am thinking positive now and adoption is always something I'd thought of so I'm feeling much calmer and just trying to feel better after the op pains. Just facing one thing at a time or it all becomes a bit overwhelming.

I hope your side affects settle down and the hormones help with the endo x

samovar profile image
samovar

I`m so sorry to hear about your suffering . It really saddened me , I really come to understanding that people go thru a lot , and we don`t know about it, thank you for sharing it with us . Stay strong girl . I `ll pray for you tonight , Lord God Please help You .

I believe strongly everything will work out for you !

God Bless.

spice47 profile image
spice47

HI cejay, I'm so sorry to hear about your problems, especially as you are so young x Your passing out etc could also be related to your hormonal problems as they are quite severe at the moment and perhaps when you have the endo treatment this will help your overall health. I had a period a few years ago of passing out, I used to fall backwards with no warning, and luckily missed several walls ! I also passed out in A and E and ended up with a huge lump at the back of my head. Since changing jobs and resting more this hasnt happened now for about 3 years, so good luck with everything xx

You may also like...

Hello and thank you to you all.,

reading on here about you all soothes me and stops me from been bored,lol xx

Thank you ladies. Update

place. You all were so amazingly supportive and made me feel loads better. I was due to start ivf...

Where do you feel ovary pain?

and also tingling all over my body which started the same time all this groin/inner thigh pain did....

In two minds about surgery. Please help x

experience much pain, but last 2 months when I have my period have a few days where pain is quite...

How do you feel about HRT and endometriosis after ovary removal?

endometrioma cyst on my remaining ovary which I'm having removed in 2 weeks and my ovary is going...