Everything to do with endometriosis

[laura2373]

I don’t know where to start but I’m literally down in the dumps ... I got diagnosed with endometriosis 4year ago ... I’ve had 3 laparoscopy an the last one I had it’s shown the endo is behind my womb .. I’ve been asking for help for 2 year now to conceive an all my gynaecologist kept offering me was contraceptive help ( I felt she was doing this to shut me up) she even offered me a hysterectomy I’m only 25 !! So I’ve always denied anything to do with it! My pain is unreal I mean it’s travelling down my right leg .. my belly is soo bloated .. I hope somebody has abit off advice ... they is loads that has gone on but I’d be here all day trying to explain!! Thankyou

[luthien]

Aww, no, all that sounds awful

Have you been seen by an endo specialist? They can look at your symptoms / surgeries in more detail and will know other treatment methods; excision lap is first on the list, see the NICE guidelines:

nice.org.uk/guidance/ng73

They say if fertility is the most important consideration then excision to remove endo should be carried out first.

Unfortunately gynae aren't all specialised enough to know that there are other treatments for endo and quite often they're under pressure to offer hormones or removal of the "issue". A hysterectomy won't get rid of endo, as it grows outside of the uterus requiring oestrogen which we all produce (even males), it can embed anywhere in the abdomen, but an endo specialist would know that.

Definitely push to see a specialist, you may need to go back to your GP. xx

[laura2373 in reply to luthien]

I’ve been to my GP numerous times & every time they have phoned an ambulance! They literally don’t have any answers & no plan what to do next. I spoken to a doctor yesterday an he said il always been in a pain regardless which made me feel even worse .. I’ve seriously never struggled as much as I am now thankyou for your reply ☺️☺️

[luthien in reply to laura2373]

Ah that's awful.

It's one of those things where we need to push for answers, we need to do the research and know what we want, endo unfortunately is an area where a lot of doctors don't have experience in or haven't been trained in so they will just treat it as a gynae issue.

You'll need to really push to see an endo specialist, it may require seeing a different GP. You can request to be referred to a BSGE center, check out their website:

bsge.org.uk/

I wouldn't expect GPs to have answers, some may if they have a personal interest in endo and want to help professionally.

The NICE link I've given you is the guidance any GP and then specialist should follow so you can print it off and tell them this is what they should ideally be doing.

You can check out the Endo UK charity website for info and there's a call line where you can talk to someone to discuss what options are available. They can't tell you what to do in your situation, but can tell you what options there are so you are better informed.

endometriosis-uk.org

It's really not helpful when we get told we just need to live with the pain and symptoms, yes we'll always have some pain but we do need treatment whether that is hormones or laparoscopic excision but it needs to be done with an endo specialist so we are listened to and have the best treatment.

Some books are:

The Doctor Will See You Now: Recognizing and Treating Endometriosis

Endometriosis: The Experts’ Guide to Treat, Manage and Live Well with Your Symptoms

Living Well with Endometriosis: What Your Doctor Doesn't Tell You...That You Need to Know

Some stuff in the books you may already know, but it's more about being properly informed to know what you can do, and what the doctors should be doing to help.

Sorry I'm not being much help. All I can suggest is read up as much as you can; there's a few books on Amazon including ones with case studies, pros and cons of different treatment, alternative therapies, what you should look for in a specialist. Find out what you'd like to happen and really push for that.

xx

[laura2373 in reply to luthien]

Just never thought it would be so hard to be honest ... I’m in agony all the time even when my period isn’t no way due .. it’s driving me up the wall especially when I’m not getting no where with professionals ... I mean I never even knew what endometriosis was until I sat on google for hours they never explained it to me at all ... I just don’t trust this hospital I had collapsed before my operation I was in no fit state for theatre but yet they still went ahead and did it .. I try not let it get to me but I suppose it’s not easy especially when it effects me 24 hours a day at the moment not even sleeping anymore xxxx