Sorry to post again but I don’t know what to do! I went to GP this morning as significant increase in pain over the last two weeks, feeling like I’m being stabbed up inside with pain extending down my inner thigh. I asked her to check coil (inserted 5mths ago) and said it looked fine despite a lot of tenderness but that there was a lot of discharge present (sorry!) so she took a swab which hurt more than usual. That was at 10am and now the pain is that bad that I can hardly stand as pain inside and lower back is horrendous!
I’m still striving to ge5 endo diagnosis as it’s in the family and I have all the symptoms but she said report from gynae says there’s nothing no endo! All I’ve had done is a hysteroscopy and Mirena insertion. Surely this isn’t right!
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Hlous
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Hi can you call the doctors and explain how much pain you are in and see what they suggest you do?
A laparoscopy is the only way to diagnose endometriosis so it sounds like you have been fobbed off somewhat.
I would change your GP. Take a friend or a parent in with you to your appointment for support. Explain all of your symptoms, how it’s effecting your life and how you have a family history of endo. I don’t know if it runs in families or not or if it’s significant enough for the GP to think they had better investigate further.
It’s your health, so be strong and tell them what you want. You have to live in pain, not them XX
I'd ask your GP surgery (if there's more than one GP) if any of them have any endo/women's repro expertise, and go with that GP instead. You're not asking for the moon on a stick, you deserve to have health concerns taken seriously and for proper clinical investigations to take place. I was fobbed off with paracetamol, ibuprofen, ponstan, feminax, and eventually tramadol for 'period pain' for 20 years before I saw a different GP who eventually referred me for investigative surgery. I've stage 4 endo and my stomach isn't in a good way after an entire adult lifetime of pain medication. Bring someone with you to your next GP visit if you can. And don't leave until they refer you for proper investigation. I had a mirena coil inserted at hospital (I'm on my 3rd coil now as they're only effective for 3-4 years), and the first one took 5 months to settle in, then it helped with pain. The second one went in fine and didn't have any crossover pain. It was brilliant. Third one I foolishly agreed to let the GP and nurse remove and insert the 3rd one in the GP surgery without pain relief and I have never experienced pain like it when it was inserted, and that coil didn't settle so well. Getting it out is ok without pain relief, getting it out in can be another matter. Get knocked out for it as a day procedure!
Yes, I’ve was told by gynae if Mirena doesn’t stop pain then it’s not a gynae prob so there’s nothing she can do! It’s quite frightening that these, so called experts, can be so dismissive.
If you've not had a laparoscopy then they can't say it is out isn't endo. As is the only way to diagnosis it. If the gynecologists you saw thinks a hysteroscopy is enough to diagnosis endo you don't want to go back to them anyway as they clearly don't have any interest in endometriosis.
As someone else had suggested check if there is a gp in your centre who has an interest in gynecology and make an appointment with them. And they should get you referred, so you are aware in the UK on the NHS if endometriosis is suspected you MUST be seen by someone with a specialist interest in endo. All gynecologist have different areas they are interested in so check the name of the person your referred to. Most hospitals usually have a bid about the Dr's who work there and what they are interested in. If they don't list endo call and ask for someone who does as pet the NHS guidelines for diagnosising endometriosis.
Thank you for your reply. I don’t understand why gp and the gynae I’ve seen are so dismissive as their logic does not stand up to anything egNICE guidelines.
No unfortunately gps don't all have the understanding of the nice guidelines for diagnosising endo. And the fact a gynecologist said that a clear hysteroscopy means it's not endo. Well frankly they shouldn't have that job and I would if I were you write to PALs of the hospital you were seen at an complain that they are not following the diagnostic procedure for endometriosis. And that they think something which can not diagnosis endo means you don't have it and that as a gynecologist they should know what can and can't be used to diagnosis gynecology conditions.
This also might help you getting further along with you diagnosising but I would make it clear that you don't want to be seen by this gynecologist again but one who has a specialist interest in endo(maybe check the hospital website so you can list a name or names that you will accept to be seen by). PALs are there for you to raise issues and concerns with.
Did you hv ultrasound blood tests and laparoscopy done? What were your initial symptoms? The doc must see you. Tgere might be a nongynae or surgical cause or even a bad urinary infection!
Mhm.. the pain is probably from the coil, which is not supposed to hurt this much after 5 months. I suggest you immediately book an appointment with a highly skilled excision surgeon ASAP, someone with extensive training and experience. I can provide names of some working within the NHS. I strongly recommend you have the Mirena coil checked out and maybe removed by the gyn (if removal becomes necessary obviously).
I genuinely hope you can get better with the proper treatment. Unfortunately no physician other than highly skilled and specialised ones are capable of dealing with endo
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