I'm having a really bad time with it at the moment, worst pain I've had in about 3 months. Dr says they can't do anything more until I've had children and said I should seriously consider starting a family now- I'm 25 and not sure I'm ready for that step.
Having tried a lot of pain relief (which has caused problems elsewhere) and more recently acupuncture, is there anything that you have found helpful?
Thanks!
Have you had your diagnostic lap with an endo specialist? If not that's your first step considering your pain and possibly other symptoms.
A specialist wouldn't suggest having a family as they currently (without a lap) wouldn't know what the problem is that's causing your pain, and pregnancy could make things worse as it can cause more pain / scarring / pulling if organs are stuck together. It have it's own complications as general pregnancy does for some women. Also if there's problems with our uterus or abdomen quite often the pregnancy could not go full term. I'm not meaning to scare you but that's just from other's women's experience on here.
Usually it's only general gynae which seem to suggest hormones / pregnancy / hysterectomy without knowing what's going on because they aren't specialised to identify individual problems / illnesses.
Unfortunately it's an area we have to read up about and push for a specialist ourselves. The system simply won't do it for us.
I've added the below which is a treatment path the NHS should follow for endometriosis, it's definately worth a read as this is what they should be following so you know what to push for next.
You're going down the right route of thinking things aren't right and something needs to be done, but don't settle for painkillers unless you had an excision lap with an endo specialist. Painkillers will just mask the problem, if there's pain something isn't right so that needs sorting best it can hence an excision to remove endo / whatever is causing that pain. Or at least an investigation so you know what to do next.
I know it's not the answer you wanted x
Hi Farahziya, thanks for your reply.
I was diagnosed with adenomyosis in January last year and have been going through the motions with the gynae consultant at the hospital. They discharged me last month as they "couldn't do anything more for me until I'd had children".
I'm not quite sure what to do next. I've had the mirena coil for 3 years and have all the side affects and it hasn't helped my other symptoms. So planning on getting that removed (app. 14th Feb).
But really that's as far as I've got and painkillers don't seem to do anything to help. Looking for any advice as to what I should do as I don't want to just start trying for kids because I want rid of the pain - and of course there are no guarantees!
Hey, sorry didn't know your history!
Yeah hormones are awful for side effects - I had the combined pill for years so I get what you mean.
I would go back to your gp if you can and push for wanting a specialist to have a look, you can ask to be referred to a BSGE center, these are specialists in a range of problems, which general gynae may not have experience of. You'll need to mention even though you've been discharged you still feel you need someone with more experience just to be able to talk through your pain symptoms and what to do next - as having a child is definately not the next step and may not be the right one for your health.
Check out:
bsge.org.uk/ for more info.
The link to NICE that I gave above will definately help; even though it's endo you can do a search on the website to for any condition and it'll give a treatment pathway - worth a play around, perhaps search your adenomyosis.
I found this though that could help:
nice.org.uk/guidance/ng88/c...
And this, that doesn't mention having children as a method to stall / postpone treatment. Which is what your general gynae sounds like they're doing; have a child, cope with the pain then come back after.
guysandstthomas.nhs.uk/reso...
Hope that helps x
Thanks so much Farahziya! You've been really helpful with all the info xx
For pain relief my doctor has prescribed me Pregabalin (usually used for epilepsy). It doesn’t work immediately as it takes a few weeks to build up in your system but once it has I’ve found it has made quite a big difference!
The only negative side effect I’ve had is some dizziness but it’s definitely worth it for the pain relief it gives. Maybe ask your GP if you could give it a try for a couple of months? 🤞🏻 xx
What about getting a NuvaRing. I use one back back and it stops some of the cycle pain
Sorry just saw you already have an iud. I use a TENS also
I've considered getting a TENS, might bring it up with my gp next time I see her. Thank you x
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