Advice about treatment from NHS

[fairyblueberry]

Hi everyone, I started trying to get help from my GP for what seemed to clearly be endometriosis symptoms back in February. I got offered the combined pill (Gedarel) which made my symptoms worse with pelvic pain now every single day and a heavier more painful period and other side effects of the pill. I asked for a GP appointment again and after waiting for so long I was surprised to find out on the appointment that it's actually a nurse and not a doctor who is seeing me, so the month of waiting was useless as she couldn't do anything for me other than check my blood pressurea.

Finally after getting a phone call with my GP another month later I managed to convince my her that I need at least some kind of test to find out what's wrong and not just treat the symptoms and I'm not willing to keep making myself feel worse with the pill (or any other type, after such a bad experience I was adamant that I don't want to take any hormonal atreatments at the time). I got a referral for a transvaginal ultrasound but I got put on a waiting list as they have no available spots in my area.

In June I went to Poland for holidays and there I made an appointment with a gynecologist specialising in endo, he did an ultrasound and didn't find anything but said that it's clear from my symptoms I have endometriosis. I got prescribed a different pill, this time progestogen only pill designed for treatment of endo (Endovelle). I was worried I would get side effects almost immediately like with the first pill but this time it was completely different and helped me almost instantly after a few days of using it.

Now I will be returning to the UK and I am not sure how to get it into my records that I possibly have endometriosis. Would the GP accept me just saying this and hopefully keep prescribing me the pill I have now? Also do you have any advice about the waiting time for the ultrasound from NHS? I will call them again to ask what can be done but is it worth maybe going privately? I am not sure about the costs as when I checked it was pretty pricey.

[Lindle]

Hi - a private scan by an endo expert would usually be the best route to getting diagnosed if there is any extent of endo present - where are you in the UK?

[fairyblueberry in reply to Lindle]

Hi I am in Gloucestershire, do you have any recommendations?

[Lindle in reply to fairyblueberry]

The nearest for you would be Mr Oliver O'Donovan in Bristol who is a renowned expert in detection of deep endo by ultrasound. This would usually be perhaps £300 - if you phone they can tell you.

If you should have deep endo then this would give you the evidence you need to get a referral to the specialist endo centre there on the NHS. It would be a long wait but at least you would then be in the right system. If he didn't find anything then it would mean that you potentially might have mild endo which is definitely worth knowing - you could then decide to have a lap on the NHS but it must be with a gynaecologist with a special interest in endo as per NICE guidelines.

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[fairyblueberry in reply to Lindle]

Thank you I will definitely check that out and try to get an appointment

[R0zie]

Hey I got my ultrasound within a fewMonths on the NHS however it didn’t find anything other than fibroids so I’ve been referred to investigate endo… I’ve been on the waiting list almost 2 years now so the wait is long the only thing about paying privately for an ultrasound is that endo might not be detected however it doesn’t rule it out and it can only really be diagnosed through laparoscopy xo

[fairyblueberry in reply to R0zie]

Oh that's so long I hope you can get your appointment soon

[R0zie in reply to fairyblueberry]

I knowww ☹️ I came to these forums looking for advice because I was struggling & have found so many people are in the same boat! Which is terrible - but also nice to know you’re not alone xo

[fairyblueberry in reply to R0zie]

That's true, we're not alone after all but the waiting can be very mentally draining especially if you're in pain and nothing is being done

[GizmotheHamster]

Hi,

thank you you for your post! I've also recently been diagnosed with Mild Endo. The doctor will not consider surgery as he doesn't think it's bad enough.

What was the endo care and doctor like in Poland. Could I please ask which clinic and doctor you saw? Would you recommend him?

Many thanks!

[fairyblueberry in reply to GizmotheHamster]

Hi, for me the doctor said we could consider laparoscopy but since I was on holiday we decided against it for now as we were short on time. I went to doctor Krzysztof Wilk in Katowice, it was a small private clinic. Although I only had a one off appointment there he offered his phone number to call with any questions later and invited me to come back whenever I am in the country. The visit was pretty quick and I was quite nervous but he made me feel more reassured and was very nice. I felt that I was being listened to and the ultrasound was offered straight away. Overall I would definitely recommend doctor Wilk, the prices are also more affordable than in the UK and I think the most important is that the treatment I received is actually helping. We spoke polish so that may be a problem if you don't know the language though.

[MaggieSylvie]

The main thing is that you want to get rid of the pain. I would put all your energy into making sure you can get the same drug that you were given in Poland. Is it Progesterone? You can get that here; I had it for menopause symptoms. If you can quell the pain until you next go back to Poland - say in a year (?) that would seem the best all-round solution. If none of this is possible, you just have to make a lot of fuss!🥺Good luck.