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!).

You could ask for a second opinion at the GP, but have you reviewed the referral criteria for your area? Ensure you hit every point and go back.

They may say she has to have a coil or similar before referral, so it's important to know if you can be referred now or if there are additional hoops to jump first.

For example, in my area https://southwest.devonformularyguidance.nhs.uk/referral-guidance/south-devon-torbay/obstetrics-gynaecology/heavy-menstrual-bleeding-primary-care-management - I'd be hammering the family history too.

Keep pushing, I suffered like this for a few years due to fibroids and had a similar experience with being offered various forms of contraception that didn't suit me or solve the issue. I only had it for a few years and I'm older, I can't imagine what hell it would be like as a 16 year old!

The mirena is often a good solution, I know it's not ideal for a 16 year old as it's invasive but if it works it lasts 5-8 years

I would ask again for a referral - there should be a gynae menorrhagia clinic - you can also ask to see Haematology if she has any other bleeding or bruising issues

That’s a very disappointing (and I’m trying to be polite here) response from the GP, @WindyWendyHouse, but sadly not uncommon in my own experience. No wonder so many women have to suffer for many years beforehand getting a diagnosis of endometriosis, if they ever do.

Is there any way you could afford to take your DD to see a gynae privately just for a more informed initial consultation? It needn’t be with a view to go as far as the costly laparoscopy (although yes, that’s diagnostic) but an endo specialist would be far more clued up about what might be happening with DD and could advise on next steps? If you had a good chat with an expert you could then go back to the clueless GP armed with facts and hammer them home.

FWIW my own clueless GP kept repeating 'let's just wait and see what happens' as I went back to her again and again in agonising pain. Was eventually diagnosed with Stage IV endo by a specialist (privately).

Honestly you could have been writing about me at your DD's age.

Tranexamic acid did nothing for me, 4 different pills made me sick, covered in spots, gain weight etc.

I missed so much school, finally when I was 18, GP referred me to gynae who did a laparoscopy and hysteroscopy, endo was found more or less everywhere.

I'm 31 and have since had 3 more laps and since I gave birth last year, my periods have been significantly better.

When I was 20 the consultant actually said to me "the best relief of endo symptoms is to have a baby" 🙄

I really feel for your daughter, it's debilitating. Keep pushing xx

The last GP wouldn't entertain the idea of a mirena due to dd age and because she isn't sexually active but this new one said we should consider it and said she would insert it. However, one of the reasons I was asking for a gynae referral is due to the fact our local hospital has a monthly mirena clinic, they offer LA's for the pain/discomfort. I am not sure it would be a pleasant experience for dd to have this done at the GP surgery.

I think it may have to come to a private consultation, I can push at that but can't afford my own laparoscopy privately (I am on a year long NHS wait atm) so £15k for two would be impossible right now (although I would happily pay for dd before mine if I had the money) but hopefully, if the gynae suspects dd may have endo he may refer her onto the local hospital?

I am sorry it too so long for your diagnosis. It is so disheartening to think we are in 2024 and still women and young girls are being dismissed when they are struggling so much.

Go back. See a different doctor.

Be pushy. Or your daughter will be condemned to suffer for years even though the pain is avoidable because the condition is treatable.

Be very clear, crystal clear in fact, that ‘We are here to get a referral to a gynaecologist for excessive blood loss and crippling pain that is affecting DD for a week every month. It is a quarter of her life when she cannot function normally or properly.’

Then give your evidence - ‘A heavy period is blood loss of more than 80ml and DD is losing 300ml every month. We also have strong family history of this and I saw Consultant SoAndSo.’

Take a notebook with you. If the consultation seems to be heading towards a brush off, pull the notebook out and start writing down the doctor’s responses.

‘Under what conditions would you refer her?’ (Check in advance so you know the criteria in your trust).

What are the reasons you are not referring her? (Definitely write down the answer to this if it comes to asking this question!)

Marking place as my dd has very heavy periods too. I was diagnosed endometriosis and adenomyosis after 25 years of pain and exhaustion. Was covered in it :(

how do you measure blood loss as someone suggested doing?

My dd is slightly younger but gynae recommended inserting under a general anaesthetic.

Word of warning: the mirena is often "sold" as the ultimate solution to period problems......so many promises that it'll probably stop your bleeding completely, you don't need to think about it for 5 years etc.......spoiler alert: it doesn't always work like that!! It actually made my bleeding worse, I gained weight, my mood was so low, I had cramps like I'd never had in my life before and had to take sick days off work. And everytime I went back to my GP they told me to wait because it should settle down. It didn't, after a year of hell I found myself in A&E after passing massive blood clots which thankfully took the coil with them!

It is simply dreadful that we have to wait years being fobbed off, we know our own bodies and we know when something isn't right.

My ds's 21 year old girlfriend is having similar issues. SO much pain that she faints with every period and she has been 'advised' to consider having a child!

Thank you, that's really helpful. I do need to be a little more assertive here. She made me feel like I was asking for something extraordinary.

I am sorry you've suffered too. Yours is a very similar timeline to mine. I have deep endo and diffuse adeno too.

Definitely push. My daughter went through years of this. Despite the fact that there are many articles on a regular basis saying how long it takes to diagnose GOs still are very slow. If you can afford it I would go private for diagnosis because at least that will speed up the process. My DD got to the stage where two weeks out of 4 were spent in bed with debilitating pain- makes me furious.

I follow a UK gynae on YT, she has just released a video on teens and endo and says she offers teens Mirena under a GA. May need to look into this.

Menstrual cups give accurate measurements of blood and fluid loss. I kept records (a detailed spreadsheet) once I started using one.

Of course, that was after years of being fobbed off. But at my first appointment after using the menstrual cup, I was suddenly taken very seriously.

I think it was something to do with saying ‘The average period blood loss is 30-40ml. A heavy period is 80ml. My periods are 300ml or more’. I can’t actually remember how heavy they were but it was significant.

But if I can can give detail like that in a consultation, it gives the impression that I have done my research and know what I am talking about. I have the data at my fingertips. If the doctor is any good (fyi - I think few are), they should write this in your notes. And once it is in your notes, they will have to justify their actions.

It becomes easier to refer you.

My Dd (can't recall if she was 15 or 16) was referred to the gynaecologist (I had to push for that). Useless. Told her she'd basically have to put up with it! Dd was bleeding for 6 to 8 weeks at a time and was having to change pads every hour. It was a bloodbath. TA didn't work for her at all. I got our GP to send her for an ultrasound (after 5 years of suffering) and it showed PCOS. She had more blood tests. She was always anaemic but this time her levels were very low and she had 2 iron infusions. This has changed her life over the last 4 months. She was actually on a period - 2 weeks in I think - at the time, and within 2 days of the first infusion it stopped! This was unheard of for her. Since then, she's had 2 periods, one lasted just over a week, the other 2 weeks, and they weren't heavy like they were before. She's 17.
I have had to ask for every test/referral she's had done - bar the blood tests and infusion. All the answers have been that it's early days, she'll get into a rhythm. No. This kind of bleeding is not normal. We should not have to push for answers like this. It all makes a child/teen's life miserable.

OP, I recently read somewhere that iron tablets don't work for everyone.
I hope your Dd gets things sorted soon. I also hope that there will soon be some sort of successful treatment for these issues.

DD had 5 years of being brushed off by GPs, with “you don’t get endometriosis at your age” or “we treat it with the pill and that’s what you are on” or “all girls have period pain, it’s normal”…etc

Finally, she got a laparoscopy after I pushed - she had it everywhere. Even after that GPs still said “you were young to get that!”

With the benefit of hindsight, DD had had it since she was 16!

It is a difficult decision to make, I know. I actually refused the Mirena for myself because even though most of my friends love theirs I kept coming across so many horror stories so I opted for a uterine ablation instead. This has proven to be the single biggest mistake of my life. The ablation failed and because I had undiagnosed endometriosis it has caused the endo to infiltrate my uterus walls causing diffuse adenomyosis.. The combination of this and the ablation failure means that I am now in agony during each period.

My biggest regret is not giving the Mirena a try, even if I had experienced the horrible side effects I could have had the thing removed instead I now have a burnt uterus lining which is not reversible and I have to wait 18+ months for a hysterectomy.

Keep a pair of electronic scales in bathroom and weigh the empty pad. Write the weight on the back with black sharpie. Weigh it again after use. The difference in weight in grams is actually the same as millilitres.

I really don't think they have any concept of how much this can control and ruin a young life.

GP's are clueless. The private gynae I saw who is the endo expert in our area and recommended by all local sufferers told me that endo almost always starts at a very young age, most women don't go on to 'develop' it, it just gets worse with age (I can vouch for that being in peri, that and endo are not a great combo).

I have had 25 years of this unfortunately - my advice, if you can afford it, would be to have an initial private consultation with a consultant that is also NHS, I have found they can then help get you onto their NHS lists. BUT not just with a genera gynae, you need to find a specific consultant that is specialised in endo rather than someone that just knows a bit about it. Look up the endometriosis specialist centres (there’s a whole network of them set up) and target those, I wouldn’t see anyone not on their list otherwise it won’t be the most productive appointment.

I exhausted all options on NHS and even with it being relatively easy to get referred etc I still had to go private to get the right treatment. It was expensive but was worth it. Right now your DD is young enough and has some time to try the private then transfer to NHS route if you can.

It is something that is a huge battle with some GPs and no battle at all with others, so trying other GPs may well help too.