Teenager endometriosis symptoms

[Angellouise]

My 16 year old daughter has had bad periods with clots , she had a cyst on her ovary rupture two times. The Gynaecologist thought she had endometriosis so did laparoscopic surgery and found nothing. Also her stomach hurts and has had a colonoscopy, everything was fine . She has bleeding 27 out of 31 days and can’t sleep or go to school and has lost 20 lbs. I wonder did the Gynaecologist just not see endometriosis? Is that possible ?

[dawntildusk]

unfortunately yes it can be missed so it may be worth asking if she could have an mri.

[Angellouise in reply to dawntildusk]

I’m going to ask the Doc for a MRI

[Bailey72]

Has she been checked out for Polycystic Ovarian Syndrome. You are describing all of the symptoms I had (45 and now had a hysterectomy). They told me I had a very thick endometrial lining but was not found elsewhere. I had excruciating period pain from belly button to knees, large clots, ovarian cysts etc. It’s diagnosed with blood tests usually as you do not have to actually have cysts to have it

[Angellouise in reply to Bailey72]

I thought the gynochologist would of seen POS but maybe not. Thank you , I will ask about it

[Bailey72 in reply to Angellouise]

They should do, but in my experience they seem to miss things. I’m not saying that is what she has but I had the same symptoms

[Angellouise in reply to Angellouise]

I’m not giving up until she gets better. Thank you for your response

[KimPV]

It sounds very likely, and her being young im sorry to say they wont be in any rush to give her a diagnoses. But keep pushing and dont stop till you get answers. Aske them about polycysitc ovaries?

Poor girl , i really feel for her. X

[Angellouise in reply to KimPV]

Thank you

[Sar_]

Could also be adenomyosis, they wouldn’t find that on lap but maybe MRI I think they can sometimes. X

[Angellouise in reply to Sar_]

Thank you

[Edrummond]

Hi I'm 16 and currently waiting to have a laparoscopy but they won't operate at the moment. I'm on provera at the moment but it's not working as well as it has done so I'm now in a lot of pain for most of the month. I worry about having a laparoscopy and them not finding anything so I completely understand what your going through.

[princessk09]

I’m 19 and they are just about agreeing to do a lap at the end of July. I was 18 when I first went to the doctors and they refused to do a lap as I’m too young and it can cause complications in the future such as scar tissue build up.

Scans can come back clear, my ultrasound did but my gynae still suspects endo. It does sound like PCOS though which may not show up on an MRI but may show up on ultrasound xx

[Angellouise in reply to princessk09]

She has had ultra sounds, they saw a ruptured cyst but nothing else. I’m thinking maybe a MRI next

[princessk09 in reply to Angellouise]

MRI will only show deep endo like around the bowel etc, it’s hard to get one now as the nhs cut the funding a bit. That’s what my gynae said but I guess it depends where you live etc

[Angellouise in reply to princessk09]

I live in Canada , we don’t pay for MRI’s. I will get my Doc to order one

[Summer_3]

I hope you get some answers for your daughter, there is nothing worse then being in pain. Make sure she sees an endometriosis specialist, who has a team of people who understand the illness. Most normal Gynaecologists do not understand it fully unfortunately.

I had many surgeries, tests, mri and ultrasound scans and kept being told nothing is there. I wasn’t diagnosed until I was under a specialist team, then when they looked back at my previous tests they told me that the results weren’t normal. It takes a trained eye to find what they are looking for. Having your support and determination will mean the world to your daughter and help her get any treatment/ diagnosis that’s needed x

[Angellouise in reply to Summer_3]

Thank you

[Hidden]

It must be so upsetting for you to have your young daughter so unwell.

I've had endometriosis since 14 but not actually given a diagnosis till I was 45.

My advice based on bitter experience would be to ask for a referral to a specialist in endometriosis, ordinary gynaecologist won't do. They often are completely misinformed as I discovered. There are now centres of excellence for endometriosis all over the country. Read patient reviews to find someone good and then get a referral from your GP. Don't be fobbed off because if it is endometriosis, it is a very serious whole body illness and needs expert management.

I do hope this helps. Excision surgery is the gold standard treatment, must be done by an expert though.

Good luck!

[Angellouise]

Thank you so much for your information