A Endometriosis story

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I started my monthlies at 11 and from here my periods were heavy and painful. A non understanding mum that told me to get on with it. Huge clots and pain that would bring to my knees. Mums suggestion was to exercise. Pain would be for 10 days with brown discharge after. Sickness and weight loss and moodswings.

At 15 I was hospitalised with pain. Was referred to a psychologist who said there was no organic reason for my pain even though a scan showed an ovary behind my uterus. Birth control and moodswings and antisickness pills and back and forth doctors until I was 24 when I finally, because I couldn't conceive,  had a laparoscopy. Gynecologist told me whilst I was recovering from anathetic and suregry. Had to have my friend ask him back to tell us again.  I couldn't spell it and had lack of Internet resorces. My dad done a lot of research for me at the time.

Had 6 months of zoladex and then progestogen. Finally went on to the ivf waiting list and fell pregnant with my first angel. 3month later I conceived with my first miracle. Had just buried my grandfather to cancer and 9 months later I get rushed in to have my Boy via emergancy c section.

6months later in for a lap and coil. Lap showed no active endo" but I've since learned there is no such thing as not active endo. 6months of hell with the coil and gynecologists refused to take it out. So my gp who had already cut the strings twice removed it an told me it wasn't even In place 

Bc and then onto zoladex again. 1 month dose and then I had 3 months in one injection, horrible horrible thing, and side effects were 100x worse. Moodswings,  headaches,  night sweats and hot flushes were just some. I wasn't called in for my 5th month injection amd luckily as I had fallen pregnant with my girl. She was born with 3 kidneys but I've read so much worse, she's so lucky not to be born with her intestine outside.

Tried for a natural birth but was again rushed in for emergency c section. When theu opened my endo must if been real bad as they asked if I knew I had it ( wasn't my gynecologist who delivered my girl) they seen to adhesions, my bowels was stuck to uterus and uterus had endo on the surface as well as endo++ on my ligaments and pelvis wall and adhesions ++. I've not been the same since

Now I'm in pain every day. My girl was born in feb 2011 and in Nov 2011 I had my gallbladder removed and in 2013 after begging for a lap to be done to find out why the pain and none stop bleeding and would only go in once I said I wanted to be sterilised. That lap was abandoned!  My fallopian tubes swollen and adhesions so the staff nurse told me. Not really seen my gynecologist since. Once to beg for a hysterectomy as I was at the end of my tether. Which he agreed to.

Payed for my notes, and the lap was abandoned leaving me with my fallopian tube twisting over my ovary and bowels and all stuck to my uterus! Not suprised I was I  so much pain. Leaving me begging for a hysterectomy. 

My gynecologist wouldn't do it so passed to me another on his team. Who agreed to take an ovary as my regular gynecologist wanted to leave them both. Had to have a bowel surgeon present. And was then discharged from their care.

Still in pain and so tierd I payed private to see a endo specialist who has confirmed endo nodules within my vagina walls and pelvic wall am awaiting a mri for more details but means another op.

I am working closely with Worldwide Endomarch and am organising Wales first endomarch.

I'm also going for training with endo UK to be a volunteer advocate with them and admin a few endo support groups and am working closely with FTWW fair treatment for women of wales and we are hoping to get some changing done here in Wales that are needed so badly.

If you are looking for support, need someone to listen please get in touch. I can advise best to my updated knowledge and support best I can. I can also guide and help you find support groups and endo specialist near you.
Stay strong sisters xx