Teen endometriosis

[Nutella75]

Hello, I have just joined the group. My daughter is 15 and since the beginning of her periods 2 years ago, she has been suffering from very bad abdominal pain and erratic periods. Her pain is so bad that I’ve taken her to A&E on several occasions. It seems worse as the day progresses and also when sat up or standing up. She feels more comfortable lying down on her side, with her knees bent. Our GP is adamant that she has IBS and that it is stress related. We went to see a private gynecologist who ordered an MRI and said that everything was ok on imaging, we couldn’t rule out endometriosis but would not investigate before early twenties. She put her on the pill. Because my daughter thinks she has IBS she is very careful with her diet, which is not helping the pain greatly. As I feel so frustrated to see her in so much pain, I have started to take her to an acupuncturist to try and manage the pain. What would be your advice to me as her mum? Thank you in advance.

[Angellouise]

I’m going through the same thing with my 20 year old daughter. She had to have a colonoscopy at 17 because Doctors thought the pain was her bowel. She is waiting to see an endometriosis specialist since we learned a regular gynaecologist could miss endometriosis during a lap surgery and a MRI. Check out Nancys Nook on fb. Keep fighting for your daughter. I wish you luck

[Nutella75 in reply to Angellouise]

Thank you and I’m sorry your daughter is going through such a tough time too. The pain affects so many aspects of their lives. I will try to find a specialist. Can I ask at what age your daughter’s pain started in relation to her periods ? Are you currently trying to be referred through the NHS? We haven’t got any private insurance. thank you.

[Angellouise in reply to Nutella75]

Her pain started at 13 and her period at 12 . We live in Canada so we have medical care but it’s so slow due to Covid and lack of Doctors here as they make more money in the USA.

[JulesUK]

Your daughters story is so frustrating but unfortunately similar to so many others who get ignored and misdiagnosed. I would go for a second opinion with an endo specialist. Endo is so often misdiagnosed as IBS

[Nutella75]

Thank you for your reply.

[Kirca20 in reply to Nutella75]

You are welcome .take care

[Lindle]

Please ignore references to the group that has been quoted - it is unreliable for UK women. They have a list of surgeons which excludes most of our excellent surgeons and many have had very bad experiences of some listed on there. In any case it isn't allowed to give names of groups on here and admin will/should take the replies down. I run a dedicated UK guidance group but am not allowed to mention it.

First of all - to address being told that they couldn’t rule out endometriosis but would not investigate before early twenties, note that the NICE guideline is for women of all ages including 17 and under (link below) who should be referred to 'a paediatric and adolescent gynaecology service, gynaecology service or specialist endometriosis service

(endometriosis centre), depending on local service provision' (1.4.3). Endo is best picked up as early as possible and when scans are negative everyone has the choice of a diagnostic lap. It is well recognised that putting adolescents on the pill for dysmenorrhea from an early age is a risk factor for progression of the disease. A surgeon doing a lap on an adolescent does need to be familiar with how adolescents can present differently - there may be a predominance of atypical red or clear lesions as compared to adults. Note these are superficial lesions that don't show on scans.

We had a new ESHRE guideline published in February this year and there is an extensive section on adolescent endo. I would have a good read of that to formulate how your daughter's treatment should be approached and get her GP on board with it.

NICE:

nice.org.uk/guidance/ng73/r...

ESHRE (full copy link on right of page):

eshre.eu/Guidelines-and-Leg...

x

[BloomingMarvellous]

Have DM you and it’s lovely to have you here supporting your daughter.

[Hidden]

Hello Nutella. Can I suggest that you ask your GP to refer your daughter to your nearest NHS adolescent gynaecology clinic (and use the NICE guidelines to support this request). I had the same issues as you trying to get help for my own teenager, but being able to have regular check ups with a consultant has been a big help. Because she is still quite young, the consultant is reluctant to subject her to a diagnostic lap (after nothing came up on the USS and MRI), so my daughter is managing by taking the combined pill continuously so she doesn't have a period. It has been a bit of trial finding a pill that works for her, but having her monitored by a specialist every few months means that if this line of treatment starts to become ineffective, my daughter is already in the system. As other posters have mentioned adolescent Endo does present differently and could easily be missed - even by a lap.

[Sky342]

Hello, I am so sorry to hear this about your daughter!! I am 18 and I’ve been suffering severe pain for the last 2 years. I have been to a nhs gynaecologist and paid privately too. Both of them appointments I was left disappointed and heartbroken. I was told I was overweight and too lose weight, that I was just attention seeking etc. No one believed me but I kept pushing and pushing. I must have rang the GP every day for months due to severe back pain etc. I finally got a referral back to a different nhs gynaecologist and I had no hope for this appointment as the other two were an awful experience. However, this time someone finally listened and I have now been put on the waiting list for a laparoscopy to see if I have endometriosis. I have had 3 ultrasound scans which were all normal, they wouldn’t do a internal scan as I was too young and they told me a mri wouldn’t be the most reliable. I was also put on many pills which made me put weight on, made my mental health worse etc. I was also told I had ibs for months and I done the low fodmop diet and nothing changed with the pain.

My advise for you and your daughter is to stay strong and not back down to doctors not listening. My last two years have been extremely hard as I’ve had to leave my part time job, I nearly got kicked out of my A levels due to not being able to go. But now I’m finally getting somewhere because I kept standing up for myself and kept pushing for them to listen!! It’s hard but you both can do it with each others help!! If your GP isn’t listening and keeps giving her pills etc then I would maybe try move to a new GP and start fresh, where they may listen to you.

I hope your daughter gets some relief and someone to listen to her!! Please don’t lose hope, you both will find a doctor that is fully ready to listen and help your daughter!! My mum has been my rock throughout everything, and I wouldn’t have got to where I am without her. She stood by me through everything and when I was too upset to talk she done it for me!!