teenage endo

[Nutella75]

Good morning. My daughter is 15 and has suffered from pelvic pain since her first period 2 years ago. She has an appointment with our GP on Monday who is treating her for IBS. I will push for a referral to an endo centre. Can I please have recommendations on NHS endo centres and preferably if you know of any who deal with teenagers, so paediatrics really. I’m in the south but prepared to travel. Thank you.

[CryBaby91]

Hey!

Have you been onto the charity website endometriosis-uk.org they have amazing advice on finding a BSGE centre. There is a search bar where you input your postcode and all BSGE registered hospitals will show in your area. That should be useful. There's also a handy section on "getting a diagnosis".

[Nutella75 in reply to CryBaby91]

thank you for taking the time to reply.

[emahray]

Hi. If you are close to Portsmouth, you could go to Spire Hospital, Portsmouth and see a specialist in endometriosis. If you have no joy with the referral, i would pay privately to see the specialist. An initial consultation was about £150. MRI scan was about £400 I think.

Good luck

[lrai257 in reply to emahray]

I couldn't agree more. After being ignored by several GPs and consultants for 7 years, it was a consultant there who gave me answers in August when they agreed to operate.

[Nutella75 in reply to emahray]

thank you. We went to Brighton as it is the only one with paediatric gynae. We paid for MRI which was normal and private specialist said she wouldn’t investigate endo until she was in her 20s and prescribed Microgynon. It hasn’t helped with the pain unfortunately.

[lrai257 in reply to Nutella75]

I share your frustrations. I was first sent to a gynaecologist in Winchester who was able to see under 18s (which in itself is a rarety, apparently) when I was about 13. That just involved pushing me between pill, after pill, after pill and telling me that I was too young to have endo despite there being family history. The following years were difficult, doctors referred me for a colonoscopy as they believed it was gastro related (I knew that was unlikely), but that was the extent of any help I received. ut when I turned 18 I went and saw a private consultant at Portsmouth Spire. They were incredible and although doubtful at first, did perform a laparoscopy and, lo and behold, diagnosed endometriosis.

What i wanted to say, is that I had several ultrasounds which all came back as normal, and an MRI which came back as normal. Please don't lose hope for your daughter - "normal" scans aren't diagnostic. I hope that if you're able to keep making noise, a professional hears you and helps very soon.

[Cactus0724]

hello sorry this isnt an answer to your question but I just wanted to say it is so great to hear you’re pushing for an endo referral for your teenage daughter. I think I’ve had endo since I was a teen too and only got diagnosed last week (I’m 34). The doctors put me on the pill when I was 15 and all it did was mask it for me for about 15 years. I have been off the pill for 4 years and I’m worried it’s affected my fertility. I didn’t even know about endo when I was younger but I feel my doctors should have taken me seriously when I explained how badly I was suffering as when they did my laparoscopy recently the endo was really bad (I’m in sussex and ended up paying to go private as the wait times are insane). It’s just nice to hear that if she does have it (let’s hope not) but if so, then it will be caught early and may not cause her so many issues down the line. Wishing you and your daughter all the best of luck xx

[Lex4 in reply to Cactus0724]

I wanted to say the same thing. Nutella75 your daughter is so lucky to have you fighting her corner and aware of this. It took me at least 17 years of presenting with symptoms to get a referral (including one ‘don’t worry, you’re just having a miscarriage’ brush off) aged 35 and unfortunately that delay has pushed me beyond the point any fertility treatment would be viable (my endo is very bad and - aged 40 - my egg count very low). Very best of luck in getting your daughter the treatment she needs.

[Nutella75 in reply to Lex4]

this condition is horrendous, I just wish there was more help out there.

[Nutella75 in reply to Cactus0724]

thank you so much for your reply. She’s been referred to gastroenterologist as the GP doesn’t think it’s gynae as she’s taking microgynon and it’s not helping with the pain… would microgynon magically stop all endo pain? Surely everyone who has endo would take it then… I’m a bit puzzled by today’s appointment.

[Cactus0724 in reply to Nutella75]

so many doctors end up thinking symptoms aren’t endometriosis but are things like IBS instead. when actually endometriosis can cause IBS and gastro like symptoms. Again I’ve heard the pill doesn’t always help all women. I’m on Cerelle and for me it does help as I don’t have a period on it and my pain is only linked to my period. I know some women have chronic pain most days. personally I would seek another opinion and keep pushing for a referral for her. Wishing you all the best of luck x

[Lindle]

Your daughter wouldn't usually get a referral to an endo centre as there are referral criteria, these being confirmed or suspected severe endo. The centres do deal with severe cases in adolescents but at this point the NICE guideline requires referral to a paediatric and adolescent gynaecology service, ideally one with an endo specialist as part of their team, preferably who also works in an endo centre. This is all extremely difficult to navigate and GPs usually won't have much idea of how to go about referring adolescents which isn't surprising really.

So seeing a BSGE centre surgeon privately would be a good idea as they might then take her on in a centre as endo can present differently in adolescents and does require a separate set of knowledge/skills. It can also be helpful to contact centres directly to ask if they would look at her case. The ESHRE guideline includes a detailed section on adolescent endo that you might find useful (link below) and I run a group called Endometriosis guidance and information resource UK (Endorevisited) if you would like to join as we have several members on there, both adolescents and their mums. Please feel free to message if you need more help. x

eshre.eu/Guidelines-and-Leg... (full guideline)

[Nutella75 in reply to Lindle]

thank you for your very detailed answer which sums up some of the issues I have come across in my various online research. I am just back from seeing the GP with my daughter. She said that her pain cannot be gynae related as she is currently taking Microgynon. Would you agree with this statement ? She has referred her to a gastroenterologist Thank you.

[Lindle in reply to Nutella75]

If she means your daughter can't have endo because the pill will have prevented it then this is very worrying. The pill treats symptoms not the disease and actually it is well recognised that giving adolescents the pill, often to stop heavy bleeding, is a risk factor for severe disease down the line.

[gemothy]

The John Radcliffe hospital in Oxford has a Women's Centre with a paediatric gynaecology clinic and endometriosis specialists. I would imagine you'd need to go via paediatrics to get a teenager to the endo centre but I'm being treated by this hospital and they've been great so far. They're a BSGE centre too.

[Nutella75 in reply to gemothy]

thank you very much for your reply, it is very helpful.