Desperate and Struggling

Hi, I'm new to the site, but I am so desperate for some advice or anything really just some help.

So here's my back story, Endometriosis symptoms started at 13 when I started my periods. My mother recognised the symptoms straight away and I went on the patch which helped a little. When I became sexually active at 16 things got a whole lot worse. I knew since 13 I had Endo but because of my age no doctor was willing to send me to a gynae. Since I was 16 I was in A&E every 2 months for 2 years, staying on the ward for 3 days to a week getting pain under control. 1 month after I turned 18 I broke down in my doctors office and begged for a referral to the gynaecological unit in my local hospital. She finally agreed as I was ''an adult''. I was seen within two months and I could barely stand the internal. The gynae agreed possible endometriosis and seeing how desperate I was she put me on the Laporocopy waiting list. It took 8 months and on my 19th Birthday I went under general anesthetic and had my op. They found Endometriosis in P.O.D, around my ovaries and uterus and my bowel. I was also diagnosed with Fibromyalgia in the same month after seeing a rheumatologist.

The method they decided was best for me at the time was the DEPO injection. which I started straight away (October 2014) which I continued with until June 2015 doubled with the patch.I was then told to go back to the patch by itself as I have a severe vit d deficiency and there's a high risk of osteoporosis However the past month has been unbearable. I haven't stopped bleeding, very heavy and clotted (sorry if TMI but feel it's relevant) and incredibly painful.

Despite being diagnosed with Endo, I'm being told ''it's in my head. That It's just because I'm stressed and have fibro''. I'm close to breaking point. I'm fed up of being told I don't know my body. I know what this is. I know it's getting worse and all I want is some help.

My question I guess is, does anyone know any other treatments that help? And what do I have to do to convince them it's getting worse.

Thank you for reading.

Lacey

6 Replies

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  • Hiya Lacey I'm really sorry that you are going through this at such a young age. I'm 42 collapsed Nov 2013 thought it was appendix scans blood tests later i had a laposcopy sept 2014 for dermoid ovarian cyst but they couldnt remove as they couldn't see/ get to my ovaries due to endo. I'm stage 4 with severe multipull adhesions around bowel rectum uterus. I've tried contraceptive pill & zoldex injection with livil hrt back up nothing has worked for me. Gynea has just put me on waiting list for abdominal hysterectomy, ovaries & bowel adhesions removal. It's drastic but if it helps I'm willing to have it done as I have two wonderful teenagers so no more children is fine & I'm nearer the age of menopause anyway. It's not for everyone. Go back to your doctor & explain how its effecting you.No matter what your age you should be respected & listened to by medical staff. I have never been told my endo pain is in my head if you're not happy with the way you are being treated change doctors or gynea. You have choices. There are many treatments out there its just finding one that will suit you. Zoladex didn't work for me but it works for my work colleague. Theres also an endo diet (worth trying) to help you, you should find it on this site. Don't give up hope & keep strong

    Mel

    Xx

  • Thank you. Unfortunately where I live there is only one hospital that's ''close'' I'm looking into a new doctor. Fingers crossed and good luck to yourself, thanks for the advice. xx

  • Hi Lacey - I have been pretty active on here today catching up on posts etc as my symptoms have reappeared in the last 6 months. I am staggered at how many women are not being heard. It is an absolute insult how you are being treated!

    I suggest you keep a diary of every trip you make to a health professional , their every response noted and a diary of your symptoms. If nothing is being done for you then I would take this to the PALS of your local hospital (patient representation

    services) and ask for their guidance. No woman should be told its in their head!!

    Was it the clinician at the hospital who said it or a GP btw?

    I am so sorry you are being put through this additional stress. Keep fighting for your

    right to be treated and dont give up

    Take care x

  • Thank you for your reply. It was both dr and gynae, as the dr put on my notes that I have Generalised Anxiety Disorder (which I do), but there's a great difference between anxiety and pain but they don't get that :/ I will try PALS. I didn't think of that! Thank you! x

  • I cant believe it ! Have they not the insight to maybe think your endo could be a major contributory factor to the anxiety. Keep a note of everything so you have dates , times names and facts. The more you have documented the more power you will have to press on.

    Keep me posted - the best of luck and dont give up - its your right!!

    I am more and more by the day becoming fired up to pioneer this to the powers that be

  • Hi lacey, I was also told it was in my head by a gynaecologist - male may I add! Took over 4 years but eventually after a hell of a lot of persuasion I got my laparoscopy, which I felt I was only getting to shut me up, even though I knew my symptoms were endometriosis related and two other gynaecologists had agreed with me but didn't bother referring me. I have it all over my ovaries and bladder, they removed some but wouldn't touch the majority so I now have the mirena coil to try and reduce growth until my next lot of surgery, which could be months. Please do not give in, nobody knows your body as well as you do as much as they like to try and tell you otherwise. Good luck x

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