Another gynae refferal no help!

[Blue1921]

Hi everyone, I’m new here and would appreciate any help!

I’m currently waiting for a gynaecologist appointment in 2 weeks (my 2nd in 12months).

Last year I saw my Gp for the millionth time about irregular bleeding and pain. I was given codine, an internal exam and referred for an ultrasound. Ultrasound suggested possible polyps so go referred to gynae.

Gynae told me sometimes women get this pain, polyps aren’t harmful and the bleeding is just something women get. Sent me for another ultrasound an hysteroscopy. Ultrasound showed nothing?! Had to chase for hysteroscopy which came 8months later. 3 polyps found and removed. Very uncomfortable and I cried with the pain and lots of bleeding after.

Went back to gp as pain no better and bleeding still happening. I’ve had the mirena coil for 4years, bleeding during/after sex and pain during/after. Constant ache in lower right tummy. Was told cervix is fine smear clear and that around 20% of women there’s no reason for it! I pushed for another refferal and mentioned a lap, gp was happy to refer.

This has been going on for about 8 years, I’m so low and worried I’ll get to my gynae appt in two weeks and she’ll say nothing she can do.

Any advice appreciated (sorry for the essay post) x

[AllthatGlitters]

Hi when I first started to get symptoms it was right hand side of my stomach which they initially thought was the appendix. I had an ultrasound scan which showed nothing. Then an MRI scan which showed adenomyosis then a laparoscopy for endometriosis.

You mentioned bleeding, I have lots of it with clots too and it goes through my clothes. Anaemic with labour pains.

Have you been given an MRI?

8 years is a long time to be trying to get somewhere, I feel for you, it really is about finding the right doctor who supports you.

Push for whatever treatment you would like, sometimes you have to tell them! X

[Blue1921 in reply to AllthatGlitters]

Thank you! I haven’t been given anything other than an ultrasound and an hysteroscopy. The mirena coil has pretty much stopped my menstrual bleeding but I have spotting all the time, before the coil my bleeding sounds similar to how yours is.

Did you find the consultants you saw supportive? I’m really hoping my next appointment will go well, I know this isn’t normal and don’t want to be what my gp referred to as the 20% who never get an answer for it. She pushed me to go for the mini pill with my coil for the bleeding and a pain clinic to manage the pain - all without knowing why it’s happening x

[AllthatGlitters in reply to Blue1921]

I would most definitely be pushing for more tests, you want to know why you are having these issues and it’s your right to know too 😀I declined the coil for my bleeding, remember we all have choices and I have learnt to be firm with the doctors as to what I want/don’t want. I have found the consultants I have seen to be very direct about the treatment they think I will need, I have had 2 ablations, 1 laparoscopy and currently on the decepaptyl injection and if I feel better on it I will have a hysterectomy.

How old are you?

I am 39, I tell them how it is and that I can’t live my life with this amount of pain and bleeding. It’s so debilitating, I don’t think others realise how it effects us x

[Blue1921 in reply to AllthatGlitters]

I’m 31.

May I ask why you declined the coil? Was there a reason at all? I had the copper before and they blamed that so swapped it to mirena.

X

[AllthatGlitters in reply to Blue1921]

Hi I declined it as I am so sensitive down there, even a smear is absolute agony, I have been bleeding for many months and couldn’t stand the thought of someone prodding down there x

[Hidden in reply to Blue1921]

Hi Blue, In my case, when offered a diagnostic laparoscopy, I signed up after thinking about it...I considered pros and cons for a whole 30 minutes. 😉

Maybe you could ask for a diagnostic lap from a surgeon with a specialism in endometriosis.

[Twinklesthecat]

Hi.

I feel for you because I was definitely in your shoes getting fobbed off, dismissed and made to feel like my pain/bleeding wasn’t important. I had multiple us scans that were normal and got the ‘this is just how it is, live with it’ lecture,

I then did my research and basically googled every gynaecologist in my area to see what they specialised in. (Each hospital website listed the team, then I searched for them on the GMC website: gmc-uk.org/registration-and...

I found that at another hospital near me there was a endometriosis specialist so I asked my GP for a referral to this particular doctor as a second opinion.

What a difference! He told me within minutes that it sounded like endo and that he was sorry no one was listening to me. He immediately arranged a lap and removed it all but I ended up (unfortunately) have to do 4 over the years but my quality of life is so much better.

[Blue1921 in reply to Twinklesthecat]

That’s amazing! I’m really praying I get someone who understands next week x

[JulesUK]

So you’ve never had a laparoscopy? If your doctor says there’s nothing she can do you need a new doctor. Insist on a referral to a specialist and have a laparoscopy.

[Blue1921 in reply to JulesUK]

Thank you! No never had one. I’ve been told all sorts. The latest being that some ladies just bleed and have pelvic pain with no explanation and as I’m already on the mirena coil there’s not much to do. That’s when I asked for a lap and she referred me again.My appointment is being done through NHS but at a private hospital and I’ve researched and their gynae has endometriosis listed as a speciality so I’m really keep everything crossed. I’ve written all of my symptoms down and if all else fails I think I’ll end up having a breakdown in there xx

[JulesUK in reply to Blue1921]

Sorry my reply was a bit short it just makes me so angry that people suffering are still in 2021 getting fobbed off. So many people have had a similar experience to you and it’s very wrong. Irregular bleeding and pelvic pain is not normal and doctors who say that are just perpetuating the myth that women should just shut up and deal with it. Unfortunately you have to take your health into your own hands, research and don’t be fobbed off. At the end of the day the doctor sees thousands of patients they are not concerned with you, you need to decide what’s best for you and demand some action. It’s the last thing you feel like doing when in pain I know I went through the same. Years of being messed around and I didn’t want to question anything because you feel doctors are in a place of authority and knowledgable and you feel awkward questioning them but you know your body better than anyone else. The NHS is funded by the UK public it’s your right to be heard and treated with respect and given the time you deserve. Just to add I know the nhs staff work hard under pressure I’m not criticising them just saying you have to put your foot down to be taken seriously sometimes. It’s a shame the coil has not been better for you it was the best thing I ever did. I hope your appointment goes well.