Severe endometriosis, 19 years old & having a bad time of it! :(

Hi,

I had suffered with pcos since I was 15- the suspicion of endo had been mentioned but never fully investigated. I had been suffering from agonizing heavy periods, mega mood swings, joint & back pain, tiredness, headaches &serious bowel problems.

I suffer from other medical problems (seizures, hormonal problems, enlarged pituitary gland & sight loss- am registered disabled as all of these have messed me right up) for the stomach problems they tested me for the whole coeliacs disease, food intolerence, diabetes ect & they eventually put it down to IBS. Last august I was rushed to a&e with crippling stomach pains. The doctor told me I needed go to my gp & ask to see a gynaeocologist as it sounded like I could have endometriosis.

I saw the gynae at the beginning of january. He did an ultrasound & mentioned that my bowels looked quite full of gas/liquid. He referred me for a laparoscopy as he said endo is almost impossible to detect on a simple scan.

I had the laparoscopy in April- there were some complications during as my oxygen levels dropped. When I woke up I was told that they had found a large amount of endo- on my uterus, bowels & generally in the abdominal cavity. They weren't prepared to try & remove it- just took some for biopsy & I was told I would need major surgery.

A day after the op I developed an infection which responded well to antibiotics. Within the next couple of weeks I was rushed to hospital twice with suspected infections, dehydration & severe pain (both times I was given intravenous antibiotics & fluids. A scan showed I also had fluid around my right ovary.

At my appointment with the consultant last week I was told that the endo was growing in lots of flatter patches rather than clumps, which makes it harder to remove. She said I'm being referred to a bowel specialist as well still needing to be under the gynae & obstetrics (think thats what it is called?)

She told me I was going to need major surgery (said loads of stuff about bowel resections, possibility of stoma bags, long hospital stays ect) which really scared the c**p out of me!

Got a phone call today from the hospital- apparently I have been given an urgent referral to the bowel specialist who wants to see me next week. I am really bricking it to be honest as this condition has been ruining my life. Since august I have had terrible, constant pain which has been crippling me, & since the laparoscopy I've been almost housebound because of the pain & tiredness. I'd really appreciate it if someone could give me advice as I am nearly 20 but feel like an old lady :(

2 Replies

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  • Hi, I am so sorry to hear what you are going through! I can't imagine it with all of your other medical issues :( I have just turned 21 but diagonised 9 days before my 20th birthday. I also have endo on my bowel, uterus - ovaries in my ovaries and on my tubes. It effects me so much but I try to carry on - some days are better than others. I had hormones ( menopause ) injections for 4 months which I didn't feel helped me that much but it may be a solution for you. I am due to have my second lap soon as they think it has come back. I know it's hard but do your best to stay postive as it really dose help and keep on top of your meds! Are you seeing the bowel specialists cause of the endo that is on it?

    Big hugs hun!!! Xxx

  • Hi Laurenb19

    Thankyou so much for your reply. Omg that must have been awful right before your birthday :( its approaching my 20th soon & hope I wont have to spend it in hospital :(

    They did mention to me about hormone treatment but because I already have hormonal problems they aren't willing to risk it. Aww I'm sorry to hear it didn't help you- good luck with your next lap, hope that it all goes well.

    I've been keeping as positive as I can- can't let this beat me :) We've got what looks like half a pharmacy here with all the meds they have me on lol (I discovered something called Tiger Balm Red a while ago- it's amazing for the back, tummy & joint pain)

    Seeing the bowel specialist next week- went & saw the gynae last week & she told me that she'd put an urgent referral through to him for me cuz I've been in hospital a few times cuz of the unbearable pain :(

    Big hugs hun & hope they get you sorted in your next laparoscopy xxx

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