GP refusing to refer dd16 to gynae (possible endometriosis related)

[WindyWendyHouse]

Since DD16 started her periods at the age of 12 they have been very heavy. 4 years on they are getting worse and more painful. They last 7-10 days and sometimes come every 2 weeks. She floods (through clothes/bedsheets etc) and basically wants to stay at home the whole week. It had a huge effect on her school life and she is about to start college in September. She is also frequently anaemic despite taking iron.

Over the last few years we have been back and forth to the GP. She has struggled on with tranexamic acid but they upset her stomach and they don’t reduce the bleeding that much but it’s her only option atm.

Last year the GP suggested the mini pill. Dd can’t take the combined pill as she suffers from aura mingraines as do I and most on my families side (mum/sister), we also have a stroke risk on my side so progesterone only meds are advised. Sadly the mini pill gave her acne, headaches and made her very moody and low, after 8 months she wanted to come off them. So she is limping along on the TA.

We went to the GP yesterday as her anaemia symptoms are getting worse. We saw a different GP this time as ours is on mat leave. I asked if dd could get a referral to a gynae because both my sister and I have endometriosis and my symptoms started off as DD’s.
The GP said no.
She then went on to ask why would I want to persue an endometriosis diagnosis because the treatment would be no different to anything she could prescribe. I replied that I had seen the top endo gynae in our area recently for my own issues and he told me he has many 15/16 year olds with endo and the earlier the diagnosis the better. I said to the gp that IF (and obviously we don’t know for sure) dd has endo just sticking her on contraception for years on end without fully knowing for sure is just a masking it all, the endo will still be there and it can cause all kinds of issues such as infertility, gut issues (I know this all too well sadly), exhaustion etc. The GP said that if I want to go down this avenue then I’d have to pay privately for dd. I said I can not afford that and a private laparoscopy is £7k. She just shrugged.

I don’t know what to think tbh. I feel really frustrated that dd may have to spend decades l, like I have, with awful gynae issues only to find it may be endo all along, years down the line.

Should I push this further? I found the GP to be very arrogant and dismissive but tbh I am not very assertive (hence why I have only just been diagnosed at the age of 50!).

My endo was picked up at 16 by gynaecologist (decades ago - in Nz which seems to be light years ahead of the uk for this ailment). You have my sympathy but everything the GP has tried will also be exactly what gynae will advance first for a patient of this age. And laparoscopy has a long long wait on nhs; the ablation will help but I have had 5 (privately) over the years, the best thing was to have children (not what I wanted to hear as a teenager!). I would change tack and focus on managing the heavy bleeding and getting referrals and treatment for that due to the impact on normal life and function.

Agree with this.

I would add that I wouldn't budge rom that doctor's office until I got a referral. It's maddening that we're a quarter was through the 21st Century and doctors STILL aren't taking women's health issues seriously.

Keep pushing!

For clarity, i had symptoms of Endometriosis from age 11, it took me until age 29 to finally get a diagnosis. I wish someone had been advocating for me in my teen years to help me. Instead because i was dismissed i ended up with loads of other issues including 5 years of infertility which TTC...

Her symptoms sound like they are having a very large impact on her life and it can only get worse if it is endo and is just left. Ask for another opinion

That shouldn't have anything to do with it
It's not like endometriosis goes away if you lose weight

Disagree with this comment. The gynaecologist won't necessarily take the same treatment path, particularly if they're a specialist. In any case, they're unlikely to insist on retrying anything that has already been tried.

Ablation is no longer the recommended treatment, and hasn't been for some time, though some non-specialist centres are still offering it. This is off the top of my head, but I think the last meta-reviews showed no significant benefit to ablation when measured against medical treatment. There is a significant advantage to excision against both.

Yes the waiting list for laparoscopy is long, but that's precisely wwhy it's worth getting on it. It's not purely about managing troublesome symptoms, though I agree that's important, it's about assesssing and managing risk.

Wiki tells me
"Endometriosis is often misdiagnosed and many patients report being incorrectly told their symptoms are trivial or normal.[12] Patients with endometriosis see an average of seven physicians before receiving a correct diagnosis, with an average delay of 6.7 years between the onset of symptoms and surgically obtained biopsies, the gold standard for diagnosing the condition. This places endometriosis at the extreme end of diagnostic inefficiency"

I completely agree however to gps losing weight is the answer to everything!

Endo and fibroids have been a big issue in my family.

Actually became life threatening for me a few years ago.

I am so sorry for you and your daughter, some GPs can be negligent in their handling and understanding of the conditions.

Unfortunately, I would suggest paying for a private appointment with a Gynae consultant.

If you stay roughly in area you often find the private consultant is often same as NHS consultant (in UK).
Able to give proper advice and add you any waiting list needed saving many months/ years of being turned away by GPs.

Thank you all for your advice. I think going privately for some advice from the endo specialist is probably the best bet to start with.

I can't believe so many of us have this struggle. It disgusts me how women's health is simply ignored and we are made to feel as though we are exaggerating our issues.

flowergirl2020 Thank you for the advice. I will print off the NICE guidelines. I will push for my daughter, I don't want her going the decades of gynae issues like I have only to find out it was endo all along.

I have had dozens of US scans over the years and endo was never detected. I had my last one in October 2023 and that came back as fine. I requested a mri 6 weeks later which came back with deep endo and diffuse adeno as well as several deep nodules.

NorthernMusician This is my concern. I don't want to assume anything, if dd does indeed have endo then we need a proper diagnosis so she is fully euipt and prepared to deal with whatever the condition will throw her way in the future. I have no idea why the GP can not see why we would want to know for sure, endo is not a fun condition to have. My sister lost an ovary to it and my friend lost has lost a kidney and part of her bowel and ended up in intenive care following a 6 hour op (her GP had also dismissed her issues for years), 8 years on she is still suffering.

DuckBee dd is a size 6-8 even if she were bigger that shouldn't prevent her from seeking a diagnosis or being referred to a gynae for advice. If she isn't suitable for a procedure/operation that should be up to the consultant to make that decision, not a GP.

My ablation has ruined my life, it forced my undiagnosed endometriosis into the walls of my uterus causing adenomyosis and it has failed causing me endless pain, I am left with a burnt uterine lining and told to just take pain relief, how have you had 5? Surely they can't keep burning the same lining?

I appreciate that a laparoscopy has a long wait on the NHS, I am currently on a year long wait for one myself but that shouldn't mean dd could not at the very least have a consultation with an endo specialist, someone who can tell us, in their opinion, whether they believe her to have this condition or not. It runs in families and both myself and my sister have it so there is a strong possibility dd may also have it.

If you read my op you will see that we have been trying to manage the bleeding but currently have had little success. Endo causes all manner of health issues which I am sadly all to aware of, I do not want my daughter fobbed off for 30+ years as I have.

Laser ablation isn't just used within the uterus, it can be used on endometriosis wherever the location. It doesn't have a good track-record, though, and there are a lot of downsides. Patients can end up with poor results, increased scarring, laser burns/damage to organs, and deep infiltrating endometriosis being left in situ because the top layer has been ablated without the surgeon realising it was just the tip of the iceberg.
The upsides are that it's cheaper and easier to perform than excision, needs less skill and doesn't tie surgeons up in training for too long. This is why specialist centres offer excision, but your average hospital offers laser ablation.

Now I am on this endo journey I am learning something new every day.

I am waiting for a laparoscopy and my gynae says it will be excision surgery, I will make a note to make sure it's not laser ablation.

Another Endo warrior (sufferer) who had a long wait. Periods started being painful by age 14. Put on the pill at 17. Also started getting migraines around that time. I got given tranxemic acid which helped a bit. High dose ibuprofen. Then I developed an allergy to NSAIDs 😬 I also had multiple ultrasound scans that never showed anything.
Took until I was 36 to see a gynae consultant because I developed chronic pain issues and couldn’t work. Finally got a laparoscopy, had some diathermy and got some relief. I do suspect based on my symptoms I have adenomyosis too. 20+ years to get a diagnosis!
I would go back with her. Second opinion and definitely quote NICE guidelines. Take it to the practice manager and PALS if you don’t get any joy.
Just to say I had my initial consultation privately - I had a 6 month wait NHS and I was in agony that no painkillers could touch and about to go down to half pay - I paid for that with a consultant that did private and NHS at my local trust. He agreed to do the laparoscopy and offered me the choice of having it privately or NHS and I opted for the latter. So I only had to pay out for the consultation. Well worth it. I had my laparoscopy and was back at work before my initial NHS consultation date (and I’d have lost more than that dropping to half pay). So that is an option.

No, they absolutely do not. However, my gynaecologist advised me to take Dd off all dairy as per a book that was recommended and that did help a bit, but Dd really loves her dairy so only followed that for 4 months. The book was called The Period Repair Manual. Worth a look.

You need to push for an NHS Choose & Book referral to your nearest private hospital. Like you, I was backwards & forwards to my doctors for heavy painful periods, I had ended up at A & E because I had fainted due to the pain & blood loss. Within a month of seeing the gynaecologist, I had a laparoscopy & then a second one to remove a cyst & find a very deep patch of endometriosis around the back of my womb & further patches on my bladder & bowel. I could have had a Mirena Coil put in, but my consultant didn't think it would help, so I had a keyhole hysterectomy instead. Has your dd considered the implant to stop her periods or norethisterone? I know the hormone doesn't totally suit her, but if she wasn't in pain & constantly bleeding, she may feel better, I would push for her to be seen Choose & Book as well, the consultants have more time & if she needs a laparoscopy or any invasive tests, you can stay with her right through.

Thank you. I have booked for dd to see the endo specialist I saw back in January. He is the best in the area so I will have faith in his opinion.

It is sad we have to pay privately but so many of us have to wait so many years for a diagnosis and I really do not want this for my dd.

If he suspects endo then hopefully due to her age he will refer her onto the NHS too.

I have that book too. I have been trying to advise dd to do the same. I have not touched dairy for 20 years so have lots of alternatives but she loves her cheese.

Check the symptoms fit, and then complain to the senior partners and practice manager, and if that doesn’t work then PALS

Be clear it is ruining your daughters life and thus her future

Any sane person would want her seen by a specialist

DD gave up dairy, and drinks oat milk. She said it makes a difference, after surgery. IIRC, she said it’s to do with the hormones in milk.