I just had a follow up with my doctor asking for a referral to the gynaecologist and she told me that I can't have a referral until I try three months of treatment which means going on hormonal treatment that I don't want.
She also said that if my symptoms get better on hormonal treatment then I won't get a referral and I'll just be diagnosed with endometriosis.
I've asked for a referral twice now and she won't let me so I have no idea what to do.
I have a review with a different doctor in a month to see how I'm getting on with the painkillers I've been prescribed. Could I ask her for a referral?
I just feel so defeated and lost in all of this at the moment
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HollyBriant9875
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For what it's worth I was referred to the gyne unit at my local hospital. I had had an MRI which showed I had endo, so the gyne Dr said he would put me on the waiting list for the endo team. He advised me to consider getting the coil because, he said, that's the 1st thing the endo team will suggest. So if I got one whilst I was waiting for an appt with the endo team at least that's one option already tried and tested. Then if it didn't help they can move straight onto either medical menopause or surgery.
I have no idea what treatment I want. No one has even given me a firm diagnosis and I haven't even seen a gynecologist. This is just all from my GP. The only hormonal treatment I'm being offered at the moment is the pill and I've tried five different ones previously and none of them have helped or have made things worst.
I would just like to talk to someone who is an expert in the field and talk through options with me. I would also like to know what my diagnosis is from an expert rather then just looking at an outcome of hormonal treatment
I just feel like they don't want to refer me and will do much as possible to not let me have a referral
Is it possible to see a different gp? The pill isn't a solution, a better option would a progesterone only treatment either in pill form or the coil - which should at least improve your symptoms.
To get a formal diagnosis you would need at least an MRI and possibly a lap to actually look inside you. It will be hard to get these through the NHS at the moment.
There is no cure for endo: there's just hormonal treatments, inducing menopause (medical or surgical), or surgery to remove the endo (this will likely need to be repeated as the endo regrows).
If you can I'd suggest paying to see a private consultant to get their opinion.
Yeah I have booked to see a different gp. My original gp has prescribed me codeine as painkillers which I've read cam make endo symptoms worse so I need to go back to discuss this.
Yeah I thought as much that you need more then a guess from how hormonal treatment goes.
I knew there wasn't a cure or anything but I just want the referral so I cam go over these options with a specialist or expert.
I may have to pay for a consultant. Just saving up at the moment as I'm in my final year of uni. I heard you can see a private gp and get a referral to an NHS doctor? So I may try that option of I get nowhere
I have recently seen a consultant privately that’s put me on his nhs list for an MRI and a lap. I was referred last May to the nhs to see a gynae about suspected endometriosis and I still haven’t been contacted. I’d strongly recommend seeing a consultant privately if you can do. You shouldn’t have to go on the pill if you don’t want to, that should be your choice x
That's so helpful to know, thank you! I think I will definitely be considering this option if my next gp appointment doesn't go anywhere. It's good to know that I can see a private consultant but still get on the NHS waiting list x
You’re welcome! I wish I’d known that a year ago, because I still haven’t even seen a gynae a year later. Such a waste of time. Just make sure that if you go private, the consultant you see is an endo specialist and works for the nhs as well as privately! Xx
For what it’s worth, you’re being very sensible by ASKING QUESTIONS about your body and why it’s in the pain it’s in. Read my profile. I’m no expert, but have years of experience with GP’S, endometriosis specialists and multiple surgical procedures which did nothing but delay symptoms further down the line. They put me on the pill too. Various ones. For years. It only masks symptoms of endo and (in my experience) when you come off it, the endo symptoms return with a vengeance because they haven’t been cut out at the root and can have spread and grown into other areas . I don’t see why you should be offered a treatment until you’ve actually been diagnosed. Think about it, it’s like offering you a nurofen or brain surgery , before you’ve even been diagnosed with a migraine or you’ve got a headache. Trust your instincts, as women we’re generally correct, especially when it comes to our own bodies. Also you can’t “just” be diagnosed with endometriosis, it takes a laparoscopic examination which is the current gold standard of diagnosis of endo and a bloody good gynaecologist or specialists in endo. The BSGE will help or even better the endometriosis uk helpline. Guesswork from a non specialist GP would be making all my red flag signals wave like crazy. As I said I’m no expert. Nina.
Thank you for sharing you experience. That has really helped me with my current frustrations. That's exactly how I have been feeling. How can someone suggest treatment before a diagnosis? Or make a diagnosis based on how treatment is going without any further investigations? I knee it was going to be long process but when we were going through the scans, I thought I was getting somewhere and I now I feel like I'm back to square one. You're right, we know are bodies and we know what it's right for them and I just want to know what's going on with it before I'm putting pills in my body. And I would much rather have a treatment discussion with a specialist
I have an appointment with a different gp next Friday so fingers crossed I might get through with this one! Holly
Hi! Glad to see in the comments that you will talk to another GP because this isnt right. If you look at the NICE guidelines, it says that if someone doesn't want hormonal treatment (which is totally valid), they should be referred to gynae. I also think regardless, investigations should be done. Endo left untreated can cause longer term damage. It is also incorrect to say you will need multiple surgeries. Yes, endo canncome back and often does but if excision is done, the rate of recurrence is much, much lower. Hormonal treatment masks symptoms, which can definitely improve quality of life and there is some evidence that it can reduce the recurrence of endometriomas (cysts on the ovaries) but it will not remove or slow the growth of endo. I understand hesitancies for GPS to give a lap to everyone as it is invasive and not without risks but also if all the signs are pointing towards endo, then I think a lap is so important for both getting a diagnosis and removing the endo at the root. You would definitely want to be aware if it was affecting your bowel or bladder, or fertility if that is important to you.
On the note of getting a lap through the NHS being unlikely right now. Yes, wait times can be long but don't let that deter you. Things are getting better and it totally depends on the region. I was put on a wait list in August 2021 and had my lap a month ago so 7 month wait for me and was worth it!
I do have those guidelines ready to take to another gp. Made the mistake of not bringing them up last time. I think they forget that we research these things to try and make sense of our own body. I mean I was prescribed codeine for pain rather then NSAIDs which has mad my symptoms worse!And my one fear is it being left and it getting worse and infertility has always been a fear of mine even though I am 21.
Thank you so much for sharing your experience. It really has put it into perspective that I am entitled to receive further help and to get a second opinion. I don't understand why this process is such a vicious circle but I won't give up and learning from being on here and researching everything has definitely helped!
I really hope you get the help you deserve! There are a lot of brilliant doctors and health staff out there but sometimes it can take a bit of pushing! Good luck xx
Trust yourself and look to get clarity first. Trouble is once you are started down a road of “ suck it and see treatment” it can start a whole raft of responses and reactions that only complicate your original complaint. You have the right to make a decision about how you want to tackle a diagnosis after you have the information and not head off down a guesstimate road. Your GP does not have the right to insist you experiment and withhold referrals because you are uncomfortable with her treatment guess.
Yeah I knew I would stuck in that situation if I started their treatment plan. Doctors should be able to trust our own judgement on our bodies and I will continue to fight to get that diagnosis whether it be through her or someone else
A lap isn't the gold standard for diagnosis as has been said. A combined approach is needed. Traditionally the GP approach was to just leave women on hormone treatment which is well documented to lead to deep endo down the line in some. This is especially inappropriate when it is is known you have already been on medical treatment so you have already done that stage, This really does illustrate the lack of knowledge still that some GPs show.
There is a process to follow so it is best to go armed with evidence as to how you should be treated:
If you have at least one of the symptoms at 1.3.1 of the NICE guideline then you are 'suspected' as having endo. Since you have already had hormone meds you should then be referred to a gynaecologist with expertise in diagnosing endo defined by the NHS as a special interest in endo (NICE 1.1.3). This is tricky as there is no list of such gynaecologists but often they have sub specialism in Reproductive Medicine. It is the responsibility of the GP to make sure this is specified on your referral.
The process then is outlined in the new ESHRE guideline. You must be given a thorough clinical exam which sometimes detects deep endo, for example rectovaginal nodules might be felt, and should also have a scan. This might be ultrasound or MRI - note that it needs to be someone with skills to detect deep endo and if an ultrasound is done they should have at least level 2 training to be able to detect non-ovarian endo (so not just endometriomas -ovarian endo cysts). You can be sure to tell the gynaecologist this at that stage. Then if endo is detected you must be referred to a specialist endo centre in tertiary care where they might do a more advanced scan before discussing treatment with you which will include expert excision by a specialist centre team.
If no endo is detected by the clinical exam/scan you are to be given the choice of medical treatment (which you don't want) or a diagnostic lap and you can be clear again at that point that you will only have it done by someone with some additional training in endo. If deep endo should be found at that point (so if it was missed by the initial investigations) then again you would be referred to a tertiary specialist centre.
Thank you for the information! And for the links to the guidelines! It's always difficult reading through those sometimes and understand them and knowing where you stand so thank you for clarifying everything. I will 100% be taking all of this to my appointment next week!
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