Frustrated and disheartened : Sorry this... - Endometriosis UK

Endometriosis UK

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Frustrated and disheartened

karlyh profile image
8 Replies

Sorry this might be a bit of a long post just need a bit of a vent.

I had my first gynecologist appointment about 4/5 months ago after different appointments and scans from my GP all over the last year. It went ok he said there was a significant possibility I had endo but wanted me to have some investigations done by a gastroenterologist to see if I needed a dual approach and put a laparoscopy on reserve for the time being and to come back in a few months after the gastro stuff was finished.

So after getting all results back from gastro with all normal. I was back with the gynecologist yesterday. It was a different doctor because the other one was not in which probably didn’t help. But basically I went in with the expectation that they would now do some more gyne investigations but to my surprise the first suggestion was to try a FODMAP diet for 6 months!!(he used his son as a success story example) And basically if In 4 weeks I was still having issue I should go on the pill and then if that made my blood pressure high(it has done in the past) to get a coil and then if I was still having issues to then go back and they would look into it. If all my symptoms are better after all that I should basically cancel my appointment because they won’t need to do anything else! I was so shocked and angry I ended up getting really upset and wasn’t really able to say much. When I questioned the fact that I needed a diagnosis his response was ‘but why?’.

I had a complete meltdown after this because I’d had enough. Left the appointment with a referral for another TV scan and a follow up appointment.

I’ve made an appointment with my GP to see if I can be referred elsewhere or see what I can do. I understand managing symptoms but surely we need to know what’s causing them in the first place. I was also told that the only way to cure endo anyway was a hysterectomy/menopause!!(which I know is not correct).

It’s just so frustrating that we are so easily dismissed! Sorry for the long post just needed to vent

I hope you are all having a good day. X

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karlyh
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8 Replies
Loulou857 profile image
Loulou857

Awww no, Karlyh this is just awful for you to go through. I’ve been there though. I started with endo symptoms in my late teens. I wasn’t diagnosed with it (via laparoscopy) until I was 30!!!!! (I’m now 37).

I have no idea why it still takes so long for people to be formally diagnosed with Endometriosis, my advice is to keep going back until you succeed in getting that diagnosis. Xx

karlyh profile image
karlyh in reply to Loulou857

Thanks loulou857. That crazy!! It shouldn’t take so long.

I know it’s frustrating when you just want to know what’s actually wrong. I’m definitely going to keep going back. My fiancé was with me luckily and seen how I was after the appointment and said he was coming in with me next time which will hopefully help.

Xx

Loulou857 profile image
Loulou857 in reply to karlyh

Yes, good idea to take in your fiancé, I always try and take my Husband along with me. I hope you get some answers soon.xx

karlyh profile image
karlyh in reply to Loulou857

Thank you xx

C2691 profile image
C2691

Sorry to hear about the rubbish time you’re having. Did they actually do the laparoscopy in the end? I know how frustrating it is wanting a diagnosis but the doctor trying to push the pill/coil on you when you just want some answers! X

karlyh profile image
karlyh in reply to C2691

No not yet. This was a follow up from my first appointment with a gyne. At my first appointment he referred me to gastro as he wanted to check that out before going to surgery to make sure there was nothing underlying there(there wasn’t) and then to come back and we would re evaluate. I ended up seeing a different doctor because the original one wasn’t in and he basically said to download the FODMAP diet app and do that and that should help. And if it doesn’t to do the pill and then the coil if my blood pressure is a problem and if my symptoms go away I don’t need to go back and if they don’t then I can come back!!

C2691 profile image
C2691 in reply to karlyh

😔if your GP is good, then maybe it’s worth asking to be seen somewhere else. For me, it was the other way round, my GP tried to push the pill/coil on me and didn’t seem to think a gynaecologist referral was necessary. When I finally saw the gynaecologist, they wanted laparoscopy and hysteroscopy without question. I hope you manage to get someone to listen soon and get some answers 😕

karlyh profile image
karlyh in reply to C2691

Thanks my GP did put me on the pill initially but when I was still having trouble she referred me. The first gyne I seen might have been better as he didn’t seem entirely against it he just wanted to explore all other investigations before surgery because obviously it has its own risks and I understood that but he was at least willing to work out what the problem was not just get rid of the symptoms. So I’m hoping I can get a referral somewhere else and they will be more willing to look at the cause as well as manage the symptoms.

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