Advice please!: Hi everyone, This is my... - Endometriosis UK

Endometriosis UK

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Advice please!

Rebekkkka
Rebekkkka

Hi everyone,

This is my first post on this site, I have been experiencing severe lower left sided abdomen pain along with back pain, nausea, fatigue and a constant frequency to urinate for about a year and a half now and am still no closer to a diagnosis. After having a clear ultrasound, multiple clear blood tests, clear sexual health screening and clear urine samples I was referred to a gynecologist. I had my appointment last week and was told that my symptoms don't sound like they're related to endometriosis as I have an implant (That I've had for about 5 months now) And this is supposed to stop all symptoms of endometriosis. I was also told that my symptoms sound like they could be bladder or kidney related and was told to try some tablets for 2 month and go back afterwards to see if they help at all. Having just received my prescription I've realised I've been given mebeverine which is used to treat IBS! I have never had any symptoms of IBS apart from the abdominal pain and my doctor is very aware of that. I'm unsure as of what to do next as I don't particularly want to take these tablets for two months knowing I don't have IBS.

This is very frustrating as I've waited 3 months to just be given tablets that aren't going to help and no insight as to what may actually be going on!

If anyone has experienced anything similar or has any advise I would really really appreciate it!

Thank you

5 Replies

If there was something to “stop all the symptoms of endometriosis” we’d all be on it! We don’t half get told some rubbish with this condition. Unfortunately your story is the same as most people being passed around with no diagnosis. Can you push for a laparoscopy to rule out endo ? that’s the only real way of knowing. x

Rebekkkka
Rebekkkka in reply to JulesUK

Hi Jules,

Thanks for your reply. At the appointment he was very certain that I wouldn't have endometriosis due to not having periods anymore but I've read so much on this site about people being put on all sorts of contraception and still having symptoms. He said I could go back in two months and review the situation and maybe have a laparoscopy done. However, I'm not sure I want it done by him as he's given me tablets for a condition I have no symptoms for and told me there's no way it could be endo related (that I'm not too sure of but I'm starting to wonder what else it could be)

Do you know if I can choose who to be seen by and maybe be referred to somewhere else?

JulesUK
JulesUK in reply to Rebekkkka

I think the fact that people who have had a full hysterectomy still have endo shows that you can get it despite being on treatment or not having periods. (Personally the mirena coil has worked wonders for me). I think you can ask for certain specialist, I changed at one point as I wasn’t getting anywhere. You need a specialist not a general gynaecologist. It makes such a difference to have someone you have faith in and who takes you seriously. I hope you get to the bottom of things soon.

If your implant is a 'mirena coil' (ie: progesterone only) then a lot of people don't get on with them, or it may only partially help with their Endo (I was one of the lucky ones, as a mirena solved my endo pain, and other issues). Also, if it was only an ordinary contraceptive coil, with oestrogen in, then that can make things worse … or at least different.

The only real way for Endo to be diagnosed, and for the full extent of the problem to be understood, is via a laparoscopy. If you have not had one, and your pain continues then I would push for one. If you are in the UK, you need to ask your GP to refer you to one of the BSGE clinics, that deal specifically with Endo: its not always easy, as GPs may obfuscate, and the waiting lists can be long. But, GPs do have a special protocol that they are supposed to follow for referring women to these clinics, so try asking about that if they seem diffident about what to do.

Also, talk to the advisors at 'Endometriosis UK' look at the link at the top of the page, they should be able to advise.

Hope this helps.

I have the Nexolanon implant in my arm that releases progestogen and since being on it my periods have completely stopped but the symptoms haven't. I've not really heard a lot about people being given these to help with endo?

Thank you for the advise on the BSGE clinics I will talk to my GO about that!

Thanks for your help.

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