My daughter is 15 and half and has been dealing with the symptoms of endometriosis since her cycle started 3 years ago
We have been passed from pillar to post and even after struggling to arrange for paid private care we still have no help.
She has had ultrasounds which were inconclusive, she has been given medication (desogestrel) which was advised as the only option and meant she spent 48 days of her summer holidays on her period and bleeding (now fully off medication.and they tried to propose Provera as combine pill is not an option due to migranes whoch we did not take), they have tried to put her on the coil (yes at 15 just to stop the bleeding!), and she has just barely managed to get through her Mocks last month for her GCSE which are this year with a terrible 47% attandnece at schoolwhich she constantly get grief from the teachers for who do not understand.
She is an aside footballer and halls been since 5 but had to stop playing g full time for Chelsea due to her symptoms.
Help needed as a single dad:
1- I have lost faith in her current doctor through the NHS and also our PHC and would like to know if anyone has really great doctor and surgeon who believes in non invasive surgery in London/Surrey who is also pediatric please??
2 - is Laparoscopic the only option and does this combine with the surgery?
3 - will surgeryonce found be a long recovery and painful?
Thank you in advance
Written by
BarneyWinnie
To view profiles and participate in discussions please or .
This sounds really awful for your daughter. At 16 i was pushed away by doctors and told to go on the pill which caused awful side effects.
When i finally got to see a gynaecologist he was awful and dismissive. My advice would be keep going back to different GPs until someone really fights your corner. Also if you have bad experiences with hospitals/doctors, contact PALS and they will get you to see a different doctor and offer support.
Unfortunately, laparoscopy is the only way to get an official diagnosis and scans dont always show something. Also, you can have stage 4 endo with no pain or stage 1 with lots of pain.
They advise 2 weeks off work/school, this extended to 3 weeks for me with painkillers but fully healing does take a while. It all depends on how much is removed too though.
Do not let the thought of surgery or recovery put her off doing it. Once the diagnosis is in place, it is much easier to get help.
Hopefully this helps in some way but dont hesitate to reach out.
1. PALS, or the Patient Advice and Liaison Service, is a free, confidential service that provides information, support, and advice on health-related matters. PALS is available to patients, their families, and their carers.
have a look on the nhs website ☺️ theyre very helpful to talk to. Each hospital trust has someone you can contact.
2. If endo is found during the laparoscopy they can treat there and then, if more serious, a specialist may be required and more planning for another surgery. There are 2 types of endo surgery, excision and ablation. EXCISION is best. Excision actually removes the lesions and ablation just burns the surface away.
3. Everyone if different, they advise 2 weeks off school/work but you just have to see as you go. I had 3 weeks off and took painkillers to help me go back for a while.
4. There is a website called Endometriosis UK, this has lots of info, i recommend doing as much research as possible, this will help you to be clued up when you see doctors. Endometriosis UK also has a helpline service. There are 4 stages of endometriosis but theres lots of info online.
I have just spent the entire weekend learning more from your reply 🙏
I am going to push for the Laparoscopy and see how long it will take to get the operation as this is the best approach, my daughter is in agreement as this needs to stop and understands all risks and possability it may return now we have the info you provided.
I wish we had found you all earlier as trying to juggle around GCSE is going to be a nightmare but I am sure we will sort it.
I also cannot believe how hard it is to even find an inclin of info as it was not the doctors who told me about endo but a friend!!
Ah well done!! The more research you can do the better for your daughter. Keep pushing and most importantly try and be there for her, the wait for appointments and results can be very draining when you are in pain everyday.
Yes, the doctors don’t tell you a lot at all, your own research is best so you can ask the right questions.
And don’t let them use her young age against her, you know her and she knows herself, something clearly isn’t right.
Put any questions onto the forum no matter how small and people will help!
Firstly, thankyou for fighting your daughter cause with her! I empathise wholly with her situation as mine started around 14/15 and I wasn't diagnosed until I had a ruptured cyst at 15 and a half- mid GCSEs.
So it is possible to have something called an internal mapping scan to try and diagnose endometriosis and/or adenomyosis. However, it is about an hour long, can only be conducted if sexually active and speaking truthfully is really painful. In a lot of cases, ultrasound is not a sure way to diagnose endometriosis.
The ONLY way at the moment to diagnose endo is for a laparoscopic surgery with an endometriosis specialist- it has to be a specialised as not all gynaes know much about it. During that surgery they can offer ablation or incision removal. Ablation doesn't get rid of the "roots" of the endo, but almost scrapes a layer away, like shaving does for your hair. Incision is supposed to remove the roots too but can also leave scars.
Choosing to have the surgery does not mean it will be a cure unfortunately as endometriosis is a life long disease and can recurr at any point, anywhere in the body.
However, choosing to have the surgery for diagnosis can be life assuring for her to explain/validate her feelings and symptoms. And hopefully the symptoms will improve for a long while (though isn't always the case).
PALs is like a patient support advice team, almost like being in a union for work, so if you have an issue they can fight your cause with you.
With regards to the laparotomy diagnostic surgery, during consultation with a specialist you can request ablation/incision surgery if they happen to find any at the same time. Recovery can be anywhere from 2-6 weeks depending on the level of surgery.
The stages of endo confuse me myself. Because there is not enough research on it. My understanding is that stage one can be minimal endometriosis cells and stage 4 is deep infiltrating cells that can run deep into organs and attach them together. However, the pain scale doesn't necessarily increase with the stage of endometriosis. It's an odd phenomena and there is ongoing research into it currently!
My absolute best advice would be to write a log of everything, when periods started, how regular, how long the cycles are, how heavy the cycles are (including ant clots and colour). Then include any and all symptoms and make note of when they are falling during cycle. Essentially the more information you can give a doctor, the less likely chance they can say "it's anxiety" or "she is too young, her body is just settling".
And one last note I really want to mention- any form of contraception that goes into the body DOES have an effect on future fertility in the long run- and in the case of endometriosis which can already cause fertility issues it is something to consider for your daughters future.
I hope that's helpful to you and your daughter
Honestly good luck! Please let us know how you get on
This helped my daughter to decide that incision laparoscopic surgery was the best option and gave her courage to proceed.
We will not be getting the coil either, she is 15 and I trust her to be sensible rather than inserting contraptions, especially with what she has been through so far.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Daughter and ovarian cysts at 20 years of age
Any advice?
Daughter College Trip Discrimination 
Asking a question on behalf of my Mum with regards to a hysterectomy. Ladies who have had it what did you keep?
Hi everyone i just wanted to know that if i have endo which i have for 17 years but in the last 10 it's reached stage 4 endo. my daughter
