Could my daughter have endometriosis ?

[Amy1304]

Could it be endometriosis?

Hi my daughter 14, it’s quite a long post so I apologise now! Back in July she woke suddenly in the middle of the night with right sided lower abdominal pain. After calling 111 a bit later in the day we went to the out of hours Doctors. They suspected appendictis and sent us to our local children department. After a few hours of being there and awaiting bloods we were sent home.

A few days later the pain was still there so we returned to the children’s ward and again she was examined and more bloods were taken. Again her bloods were showing signs of something but still within range. So we were sent home.

We costumes the Gp who unable to really do anything other than prescribe some buscopan, referred is to a surgical consultant.

We first saw the consultant in November, he was clueless as to what it could be and requested an ultrasound. The ultrasound was on 19th Dec and showed nothing suspicious! (Frustrating)

So a last week we went back to the Gp who has now referred her to a gynaecologist.

She started her periods when she was 10 - they have over the last year become VERY heavy and VERY painful. Quite recently she has developed (what we thought) an intolerance to dairy but now I read the symptoms which include diarrhoea!

Would be greatful for anyone’s opinions.

[Hidden]

Hello,

So sorry to hear about your daughter! That isn’t easy to deal with. I have had painful periods ever since I started having them around age 12. I’m 22 now and just last year in August I had my first lap, due to painful periods and right lower quadrant pain, which showed a small amount of endometriosis. Then a few months later the pain came back ( my periods are much better due to birth control) but I had that horrible pain in my lower right abdomen.

I was in and out of the hospital multiple times with suspected appendicitis and many tests run that showed “nothing was wrong.” One of my horrible hospital stays, a HIDA scan was ordered and it showed my gallbladder was severely inflamed. I got that taken out.

A few weeks later I was back in the hospital with the same right lower quadrant pain. They still weren’t convinced it was my appendix but I did so much research into this and I knew it was. I had all the symptoms. None of their tests showed anything. I just got my appendix removed in December and it appeared normal. However, when they cut it open for pathology it was severely infected on the inside. I’ve had multiple CT scans and abdominal ultrasounds and TV ultrasounds as well as pelvic exams, all “normal.”

I just wanted to bring this up as my case was an “odd one” as they called it. If I didn’t demand to get my appendix out my outcome could have been much worse. I wanted to let you know weird things like this DO happen. But again, as they told me, it could be a number of things. Perhaps they’ll be more aggressive with their approach as your daughter is a bit younger than I am. Again I just wanted to throw this out there just in case she has something weird like me.

[cmbxm]

If it is endometriosis you’d be hard pushed to find a surgeon willing to operate on her at her age, because of scarring and adhesions that can grow, I’m 18 and basically had to beg because of these reasons, not only that endometriosis is apparently hard to find if you’re younger because the cells can spread and therefore are harder to see with the naked eye.

I know your daughter is only 14 but trying her on birth control might be a start? I know the idea of your daughter being put on birth control is daunting but it might help calm her periods down more than anything, I was taking a week off school a time once a month when I was her age, I went on birth control when I was 15 and it drastically reduced the pain and bleeding (I went on cerelle) and it allowed me to stay in school and only need the first 2 days of my period off which helped me a lot!

When you see the gynaecologist they’ll most likely suggest bloods to rule out pcos and another ultrasound but endometriosis doesn’t show up on ultrasounds, push for an mri as it can show up on mris, don’t be deterred and keep fighting for your daughter, it takes years to be diagnosed and you know your daughter better than any consultant, so keep pushing and don’t let your daughter be ashamed or anything about her periods, she has to tell the gynaecologist exactly how heavy and how much pain she’s in, I’d suggest starting a pain diary and documenting how heavy and how painful her periods are, good luck and I hope you get somewhere x

[princessk09]

I’m 18 and been having painful periods since I started at 10/11. The doctors are still refusing a lap on me due to fact that it can come back as scar tissue from surgery and cause fertility problems. Tbh I don’t even know if or how much damage is already done.

At 14 it’s hard as they don’t take you seriously and will just throw different contraceptions at your daughter due to her age. They did this with me at 18.

If you can afford it, definitely go to a private endometriosis specialist. Best decision ever as he found tenderness spots the general gynae at the hospital could find (2 weeks apart) also the specialist has found some lumps of tissue on my ovaries which has never been picked up. The ultrasound last July came back clear.

I know how she feels as I get in agony during my period and she’s lucky to have a supportive Mum. Mine is very unsympathetic and calls me a liar and said all this is my fault, with the painful periods and needed surgery

Ps. Dairy and gluten intolerance can be linked to endo as I have this as well but the blood test for coeliac disease came back normal last year