Need help...: Hi all, I don’t really post... - Endometriosis UK

Endometriosis UK
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Need help...

hlg1712
hlg1712

Hi all,

I don’t really post much on here anymore as after my lap it came back no endometriosis. But recently I have had further testing as they thought everything was gastro (despite it affecting periods etc) but I had an ultrasound to find I had a retroverted uterus. I feel like something is definitely wrong with my uterus. I’m having weekly hospital appointments, I feel like I’m such a burden to everyone and feel so lonely. My mental health is screwed due to pain and other life stuff but drs won’t do anything as I’m not a harm to myself or others. I really don’t know what to do I’m in so much pain 24/7 and I’m in final yr of college before uni. If anyone can relate to any of this or anything. Please offer suggestions I’m at a loss. I’m having daily panic attacks and daily meltdowns.

11 Replies
oldestnewest

Hey hlg1712

I am new to this but know exactly how you feel, I first started experiencing symptoms in my 1st year of college too (2011/12). I had multiple a&e visits and multiple consultants with none of my college friends understanding the day to day agony and constant absences.

All I can say is keep at it! EventuLly you’ll get the care and services you need!! After many years of GP, a&e and consultant visits I have finally found a consultant who believes in me and has provided me with so many different services. I finally got my diagnosis back in June 2018, I am living with it as best I can with some flare ups but mostly day to day I am relatively pain free and symptom free... however sometimes feel very low and don’t believe many people in my life understand me and my condition even after so many years. So I also feel lonely at times.

Feel free to message me if you need to vent. I sure do need a place to vent openly without judgement sometimes!!

hlg1712
hlg1712 in reply to Emalily18

Thank you, I may take you up on that offer x

Was the gynae that did your lap on the BSGE.org/centre list? If not they are not an endo specialist and may have missed endo if it was in the difficult to get at places below the womb.

You don't say when the lap was done. If it isn't long since then I'd have to wonder how they didn't spot the problem with the uterus.

Did you have an MRI prior to the lap. It really should be done as a first step as it can spot endo in the more awkward places.

Push to get an MRI and be referred to a specialist on the BSGE.org/centre list.

I wasn't diagnosed until I was 47, and then I diagnosed myself and insisted on being referred. Numerous gynaes had dismissed my problems on normal period problems and told me my constipation could not have any connection to gynae problems.

hlg1712
hlg1712 in reply to NW248

I didn’t have an MRI, my lap was back in May and I have my first outpatient follow up just after Christmas

RicEndoUK
RicEndoUKAdministrator

Dear hlg1712,

I'm very sorry to hear how you are feeling. Please know that you are not alone and many of us understand exactly what you are going through.

If you would like someone to talk to, Endometriosis UK do have a free confidential helpline run by volunteers who have experience of what you are going though. You can see the opening times here:

endometriosis-uk.org/helpline

I'm not sure if you have tried this already but in some areas, you can self refer to access psychological therapies on the NHS, but without going though your GP, if you are needing help with mental health. You can search for services near you here:

nhs.uk/Service-Search/Psych...

Please take care and keep us updated on how you are.

RicEndoUK

Volunteer Moderator

I believe that, 'officially' (according to the official NHS protocol, which is in place with regard to the treatment of Endo, and which should be followed by gynaes and your GP) you cannot be referred to the specialist Endo Clinics (or BSGE Centres), that NW248 refers to (above), until you have had a laparoscopy with an ordinary NHS Gynae.

This is done primarily to look for and assess any Endo which may be in the abdominal cavity. If there is only simple, easy to access Endo, then an ordinary Gynae can remove it (although it seems they didn't find any in your lap). However, if the initial lap reveals more difficult types of Endo - or Endo in difficult and dangerous places (eg on the bowel) that ordinary Gynaes cannot deal with - then, officially, you should be referred to a BSGE Centre for further treatment.

The problem is, that some ordinary Gynaes do not have the skills to identify all the forms of Endo tissue, or the ability to look in some of the very difficult to access places where it may be. This is the great problem that surrounds the treatment of Endo. From what I've read on here and elsewhere, the BSGE Centre gynaes are wonderful, but it's the getting to be seen by them that is the difficult part.

However (!!!), as NW248 rightly pointed out, it's worrying that the Gynaes who did your lap, did not spot, or mention, the retroverted uterus(!), so that may be good grounds for demanding a second lap, and maybe with a better specialist.

Has anyone suggested taking the pill, or have you tried it and it didn't work? It worked for me for most of my life - although it's not an ideal solution. Another possibility is a Mirena coil - which provided me with blissful pain-free years when I eventually had one inserted … although you may be a bit young - I don't know how it works in younger women.

Is there any counselling support at your College, also is there someone you trust at your GPs who you could talk to? Or a local Women's Centre, or indeed a local Endo Group - other women in your area may know good people to see where you live, both for Endo help and counselling (The Groups should be listed on the 'Endo UK' website - I'm surprised 'Ric Endo UK' didn't suggest it. There's one near me in Devon). You may want to go via your GP, for NHS counselling, but I usually found self-help and Women's groups more useful.

Also, do all you can to avoid and alleviate the stress. Do things you love, treat yourself and spoil yourself - although also try to find out about good diets for Endo, as well as making sure you are exercising and trying to help you body (and mind) as much as possible. Also try some groups that relax and uplift you , like yoga, dancercise. or whatever rocks your boat.

I hope this helps, that you get more advice from others on here, and that you find someone sympathetic to talk to whether it's at College, NHS, privately or just a local group.

Take care,

Gritty

hlg1712
hlg1712 in reply to GrittyReads

I have the mirena coil fitted, the college sent me to the gp the gp refused to do anything then I went back to college who sent me back to the gp again. I’m going to ask at the next appointment what she recommends doing

GrittyReads
GrittyReads in reply to hlg1712

How long have you had the Mirena? Mine took about 4 months to kick in.

Also, can you see a different GP, in the practice? One who is more sympathetic? And maybe take some one with you! I don't think they have a right to refuse to treat you, Endo is a recognised medical condition. Also, the 'protocol' that I referred to, that GPs are supposed to follow for the treatment of cases of severe Endo is official!!

So sorry you are going through this, it makes me so angry! Do try to find a local 'Endo Group' and try to learn as much about Endo as possible - also (I'm serious) there really is a book 'Endo for Dummies' that is very good!!

Take care,

Gritty

hlg1712
hlg1712 in reply to GrittyReads

I’ve had it 6 months and my pain is no better. The only benefit of it is I don’t have periods, but I get all the symptoms running up to it

GrittyReads
GrittyReads in reply to hlg1712

In that case, the GP has to do something!

As I think I said, an exploratory lap - as well as maybe, first, ultrasounds plus any other tests to make sure there isn't something else going on (ultrsasounds do not show most Endo, unless it's on the ovary) will be needed, and hopefully then a referral to a BSGE Centre. However, do some research in your area: try to find an 'Endo UK' support group, as the members may be able to tell you who the best and most thorough and supportive local Gynaes are, nearby, to do the lap. It is amazing how much Endo is missed by ordinary Gynaes, and how many remove the Endo that should be left to the BSGE specialists. But try to learn, all you can, so you can present your case, well.

Take care.

Hello

I'm so sorry to hear about what you're going through and how little help you're getting.

A lot of what you've wrote resonated with me. It sounds similar to my story (you can see this on my profile). My advice is to keep fighting girl. You know something isn't right, just keep pushing for help. I know how awful it feels when the drs treat you like you're a hypochondriac but just know that you're not making it up.

If you don't have an understanding GP, then try and find one

Trying to get an mri might help, it's what finally got my endo and other issues seen.

Trust your instincts. Don't give up and just keep fighting.

X

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