Advice

Hi everyone, I'm getting really desperate and need some help. I've had bad periods and pain during sex for years and have now had constant abdominal, back and leg pain for three months, all day, everyday. I was referred to a gynaecologist three months ago by a doctor that said it was more than likely endometriosis, but I would need a laparoscopy to confirm it. I've seen five more doctors since then, who have said the same thing.

I saw the gynaecologist today. He said it was probably not endometriosis "based on my symptoms" but didn't know what it is. He said I'd have to wait four weeks for an ultrasound scan and "see what happens".

I'm missing work, pain medication of any kind doesn't work and I'm at my wits end. What can I do? Do I believe the four other doctors or the gynaecologist who spent half an hour talking to me? I can't cope with this pain for another four weeks but I feel like doctors aren't listening.

Any tips or advice would be great.

Thank you 😢

[luthien]

Sorry to hear you're going through all of this.

Ideally you really need to have a laparoscopy to diagnose endo, unfortunately it's something we really have to push for.

You can look up the BSGE website for guidance and specialist endo centers near you, which your GP can refer you to, you'll then be able to talk to a specialist there and they'll go through what you can do plus what happens during your lap and why it's needed. Or if you feel you've done all that and you just want to find out if it's endo you can be referred through the NHS system, but make sure it's an endo specialist as a general gynae may not be able to spot endo. Bear in mind there can often be long waiting times, I think that's why some women go through the BSGE centers.

You can have all the tests you want but the only way to see whats going on is to have a look. If you talk to your BSGE center or endo specialist, ask to see if they can do a diagnostic with exicision of endo; both in one is less waiting. Excision is the best at reducing symptoms but not all specialists do it; others are ablation and laser - these are less effective and regrowth is quicker.

Have a look at endometriosis-uk.org/ for help and support, there's lots of information and a helpline for any thing you want to talk about.

[Hidden in reply to luthien]

That's great thank you so much for your help I just feel like the doctor today didn't listen to anything that I was saying and I'm worried about the repercussions if I leave it for too long :/

[luthien in reply to Hidden]

Ah noo, you're doing the right thing by coming here and asking

I understand your worries; I left mine to long so definitely be proactive xx

[Hidden in reply to luthien]

Thank you ❤ I can't believe how common this is, every woman I've spoken to recently either has it or knows someone with it - how does it still take so long to get sorted?! Crazy. Xx

[luthien in reply to Hidden]

I don't know, it's doctors education. I guess also that we don't push early on for treatment as we assume docs are correct. It's still considered a taboo area to discuss so it's only when we're older that we think "It's my body, something's not right, yeah it's women's cycles but I need to find out what's wrong with me".

That's all changing, we're all challenging perceptions and views xx

[SarahMia227]

Hiya,

That all sounds awful, I'm so sorry you're suffering like that. Unfortunately, a lot of doctors aren't that clued up on endo - I also had several say things like "I don't think your symptoms are consistent" which is very frustrating when they're not suggesting what it could be. Endo rarely shows up on an ultrasound (it didn't on mine), but I think that the NHS wants to try all of the cheaper diagnostic methods before they do a lap.

If you can't afford to go private, I'd say your best bet is to wait for the scan, and if it comes back negative argue for the lap. The specialist centres are meant to be really good, but I got my referral in October and I'm not seeing a doctor until April, so it's not necessarily the fastest option. Then again I'm in London, I don't know what wait times are like in other parts of the country!

Don't give up - you know your body better than anyone.

xx

[Hidden in reply to SarahMia227]

I've decided to discharge myself from the hospital I was at and asked to be referred to a specialist centre.. to be told there was an 18 to 20 week waiting list. Awesome, but it's a start I guess! Thank you for your help xx