Possible endo/rejected referrals

[CitizenErased]

Hi everyone. I'm new here but wondered whether anyone has had a similar experience to me.

A few years ago I was on the contraceptive pill, when I noticed that my periods were getting later and later. I used to get the normal bleed during the seven day break of not taking the pill, but then I started getting my period half way through that week, and eventually started getting it after the pill-free week. I mentioned it to a couple of doctors, but they said it was normal, so I carried on.

I was eventually told I had to come off the pill because I had been on it for too long and it has the increased risk of breast cancer etc. So I convinced my partner to have a vasectomy (I don't want kids and he doesn't want any more – he has two already) because every woman I know who has had the coil or the implant has had problems (including abortions, unplanned pregnancies, constant bleeding, problems with removal of the implant/coil, and problems with the coil moving around to name but a few!).

My periods got back to a normal regularity for a year or so, but then I noticed they were getting really far apart. I started tracking them at the beginning of 2022, and my cycle was 45 days long, then 52, then 65. Mentioned it to a doctor again and they brushed me off.

By summer last year, I started getting lots of spotting/light bleeding between periods and my periods got a lot more painful and completely irregular (two weeks apart, six weeks apart, etc.). The 'normal' symptoms of cramps and lower back pain I used to get for about two days before/during my period were now starting two weeks before my period and getting much worse during my period. I also started getting ovary pain, lower back pain radiating into my legs, extreme breast tenderness, brain fog, nausea, light-headedness... the list goes on. I can sometimes be in pain for three or four weeks at a time. Is this similar to anyone else?

In December, I had the worst period I'd ever had pain wise. I had a period lasting five days, a two day break, and then bled heavily for 15 days, with loads of big clots. The pain left me in tears and I rarely cry! Painkillers did nothing to help. Ever since every period is painful enough to keep me in bed for two or three days, or I just have to suffer through work.

I went to the docs and he referred me for an internal ultrasound and a blood test, which both came back normal. He then said he couldn't refer me to a gynaecologist yet because we needed to 'build a case' or the referral would be rejected. So I also did a couple stool samples, and the inflammation one was negative, but the FIT test came back positive, meaning there were trace amounts of blood in my stool.

The doc then said I had to have a colonoscopy, because there was a possibility of bowel cancer. So everything to do with my actual symptoms got put on hold. Eventually (after delays and cancellations) has the colonscopy a couple weeks ago, and it was all clear. I've suspected endometriosis since December, but never mentioned it to my GP as I didn't want him to think I was self-diagnosing. But he has now said it could be endo. But he also said that even though we've built up a case to rule lots of stuff out, my referral might still be rejected because, in his words, gynaecologists are very fussy!

Has anyone here had a referral to a gynaecologist rejected?

Sorry for the long post, but it's nice to get it out to some people who I think will understand!

[Pacotj]

My GP delayed my referral for 7 months without me knowing so I can completely understand your frustration. My best advice is to have a proper chat with your GP, have everything written down and list the issues you are having and that you think it could be endometriosis and you would like a referral because your daily life and activities are being negatively affected because of the pain. I find if you focus on the bleeding you get absolutely no where, as one gynaecologist said to me “it doesn’t matter what’s wrong with you it’s the same treatment for heavy bleeding” and it was only when my partner and I went through failed fertility treatment that I was taken seriously and yep low and behold 10 years later from first going to a GP I have endometriosis and my tubes are completely blocked. With a condition that affects women you really have to be your biggest advocate and if your GP refuses a referral you ask to see a different one who takes you seriously. My cycle has been known to last 60 days or so and I get ridiculous amounts of bleeding when I ovulate as well as horrific pain that’s debilitating. Keep fighting until you are taken seriously x

[CitizenErased in reply to Pacotj]

Hi, thanks so much for replying! It's nice to know none of us are alone!

I went to my GP with a written list the first time, and he even kept it, and even now, every time I have an appointment, I have to explain my symptoms again because he either can't remember or doesn't read my medical records 🤦‍♀️ Such a nightmare! Thinking about changing to a different GP.

I'm sorry to hear how long it took for yiu to get your diagnosis. I actually feel a bit bad moaning about how long it's taking for me because my symptoms have only been bad since December last year! Thanks for telling me that you sometimes have a long cycle too. That was the one thing that I didn't think fit with endo.

I hope things get better for you soon x

[Pacotj in reply to CitizenErased]

I have the same problem where they try to prescribe meds we have already tried and it can be super frustrating when they don’t take two mins to read their notes before your appointment. Persistency and explaining how your quality of life is affected is key.

Don’t feel bad for moaning, I wish I had moaned more earlier on but instead at that point it was still so very taboo and I hadn’t even heard of endometriosis so I just assumed having horrific pain was normal for a woman!

[purplevelvet9]

First of all, I’m so sorry that you’re having to go thru this! It’s a real mental and emotional struggle as well as physical.

I agree with Pacotj, write down everything and if you can create a timeline even better. Keep badgering the doctors until you get a referral, go back weekly if you have to. Gynae are not that fussy, despite what your GP is saying. You need to find a doctor who will advocate for you. Bleeding like this isn’t normal and there should absolutely be more concern for you!

Shockingly, to get a diagnosis, I printed off an outline of a human body, marked where all my issues were, wrote down all the symptoms then took it to the GP and said “that’s endo isn’t it?” and she agreed and got me referred.

I feel like I’m banging the same drum in lots of my replies on this forum but women’s health isn’t taken seriously enough so we really do have to become a nuisance to get what we need.

Good luck xxxx

[CitizenErased in reply to purplevelvet9]

Thanks so much for replying! Yes, I've kept a record using the app Clue. It's super handy for recording symptoms. I think perhaps I'll just have to change GPs if the gymae reject my referral. My docs are rubbish anyway, and have screwed up every appointment, referral and blood test I've had so far anyway. I'm glad you got referred in the end! I was shocked when my GP said my referral might be rejected. I didn't know that was even possible, hence me asking on here! Madness!

I hope everything is well with you and that you're now getting some help x

[Avourneen]

i'm not sure that gyanes actually refuse referrals , what they might do is send the GP a snotty letter saying why did you refer this person? It is a tragic state of affairs that GPs are having to "build a case". But I have never actaully herad a GP say this. It also sounds as though you are a little intimidated by your GP "I don't want him to think I'm self diagnosing". You sound as if you are a very gentle polite person and you are trying to not "make a fuss" and keep your GP onside.

Sadly this is why so many endo sufferes take 10 plus years to get diagnosed I was told i had IBS for years and strangely offered lots of tests for bowel issues (like a colonoscopy-which will not pick up endo on the bowel) I just kept getting sicker and sicker untilI couldn't walk 15 minutes to work.

I had actually had endo for 20 years and it was at stage four and had done tons of damage by the time it was diagnosed, I only got diagnosed by going to the GP and saying I was certain I had endo as my sister had it and it is hereditary(GP didn't know that) and that I was insisting he give me a referral. I did get a referal and a scan and there was such a large mass they thought it might be cancer and they operated on me within 3 days.Sadly the gynae was not a good gynae and I had to have another op witihn a couple of years.

Thousands of women on this site have the same story of being fobbed off for years by GPS who know nothing about endo. Your GP is a public servant , you actually pay his wages via your taxes he is not some lord who can decide well I think I might refer this patient if she is very nice to me, although many GPs seem to take this attitude. You are being much too nice.

Go back to your GP say" I am in agony , I'm in so much pain I cannot bear this any longer, I have checked and I have all the symptoms of this being endometriosis. you as my GP have the resposibilty to refer me to a gynae and to get this investigated" Don't be apologetic , you don't need to be rude but be firm. If the GP syas no for any reason book an appt with another GP and explain the situation. If they all say no (unlikely) change your GP practice.

In the meantime research your local gyanes online, it's really important that you get a gynae who specialises in endo. I was referred to one initially who had no specialism in endo and who just asked me a few questions and didn't even give me a scan and sent me off saying I had mitttelsmerch. Look up a gynae who specialises in endo and if I were you Id call them and ask for a private appt so you don't need to wait, they may well even take you for an appt without a GP referrel. You need to be very firm and assertive with your GP and/or get a private appt. Your health is the most precious thing you have and you have every right to be referred, please go back and stick up for yourself, I know it's hard for a gentle person but if you don't do it no one will. Good luck. XXX

[CitizenErased in reply to Avourneen]

Thanks so much for replying!

I'm sorry you had to go through a colonoscopy too, but it's nice to hear that I'm not the only one! I had a trainee and it was bloody brutal!

Thank you for saying I'm being too nice. I think you're right. I've been far too worried about ruffling feathers (especially because there are signs all over my GP practice about how they will not tolerate rudeness/abuse from patients). But you're right. I need to put my bloody foot down for once haha! I'll see whether this gynae referral goes through, and if it doesn't, I'll go raise some hell!

I looked at going private but I just can't afford it. So fingers crossed for this referral anyway. I'm sorry to hear about your difficulties. I can't believe your GP didn't know it was hereditary! That's mad! I hope things are going better for you recently x

[Booty42 in reply to CitizenErased]

Hi

Just a note while reading through your thread. Referrals do get rejected by Gynae and unfortunately there does have to be certain boxes ticked to meet the criteria for a referral to be accepted.

Hopefully your GP can get enough of those boxes ticked for you and get you referred because you don't want the stress of it being rejected and your GP having to build further on it and re-refer as this takes time.

Good luck

[Skybluepinkpaint]

Hi

I’m so sorry to hear this. My symptoms are very similar to yours but my cycle with these sort of peaks and troughs throughout the month, although they are there daily in some shape or form.

My referral got declined because I hadn’t tried every other possible solution (had already tried natural cycle, combined pill and implant) and I’ve had to have a coil fitted, even though I didn’t want it, before the gynaecologist would accept my referral. That in itself was a nightmare as my Husband has had a vasectomy so my local clinic wouldn’t do it, so I had to wait for a GP appointment to have this done, which took 10 weeks. I now have to have this in for at least 6 months to see if it helps.

Both my GP and another dr who I spoke to at the clinic is sure I have endometriosis but there are so many hoops to jump through before the hospital will consider seeing me. Hopefully this is just my trust’s policy and you don’t have to go through all of this 🤞🏼

Hope this helps a bit xx

[CitizenErased in reply to Skybluepinkpaint]

Thanks so much for replying! Although I'm sorry you've had similar symptoms, it's nice to hear that I'm not alone. I hope the coil works for you. I'm dreading that they'll tell me to do that. I just don't want one personally. But to be honest, just getting a diagnosis would do wonders at thos point. Not knowing is the worst!

I'm sorry you had a rough time getting referred too, but thanks for sharing your story. The more I read other people's stories, the better I feel! I hope things get better for you soon x

[Skybluepinkpaint in reply to CitizenErased]

I completely agree about the diagnosis. I absolutely did not want the coil either but had to to be able to be seen 😣 just so frustrating to feel like we have no bodily autonomy and have to jump through all of these hoops.

At this point even if they can’t offer treatment, I will do almost anything for a referral just to know, if that makes sense.

I’m so sorry things are so rough for you at the moment. I completely understand how difficult it is. Sounds like we’re all in it together which sucks but at least we’re not alone xx

[CitizenErased in reply to Skybluepinkpaint]

Exactly! It's like we have no choice. Either constant pain alongside all the other symptoms, or hormonal treatment that has it's own side effects, or seriously invasive surgery that needs to be done again at some point!

I totally agree though. I feel like if I can just know for sure that it is endo and not anything more sinister, at least my anxiety about everything will reduce and I can just get on with managing the pain etc. It does suck, and I'd never wish it on anyone. But you're right. At least we're not alone! Xx

[Emmaja_ne]

mine wasn’t rejected but it took 10 months from time the referral was sent to actually get an appointment. My periods were exactly the same and one dr said it couldn’t be endo because with endo you usually have short cycles. Well I’ve now been diagnosed with endo after years of the GP not listening to me

[CitizenErased in reply to Emmaja_ne]

Thanks for replying! I'm sorry to hear you had difficulty too. I've been told it could be up to a 20-week wait in my area, so I'm determined to make that appointment count (if I get it at all). It's reassuring to hear that others have long gaps between periods too. All of these stories are giving me plenty of ammunition!

I hope you get listened too from now on x