Little bit about me if someone or anyone can help or recommend anything.as im in so much pain and suffering with this all.

[Courtneylouisse]

I got diagnosed with endometriosis 2 years ago after going backwarsa and forwards to the doctors for 4 years with what we though was period paid they sent me for scans and told me i had this so i then went and had the marina coil fitted months after this was fitted all my pains came back and bleeding so the put me back on the pill which im taking day in day out and still getting stomach pains feeling sick,dizzy, hot flushes and always tired i take painkillers constantly which are either paracetamol and ibprofen which dont work at all or co-coodamol which dosent work as isnt strong enough- codiene is the only thong that seems to work but obviously you cant take it for to long. So PLEASE if anyone has any recommendations for what to do as the doctors now just ignore me and tell me it wouldnt of come back this quick after happing a laparoscopy 2 years ago. I dont know what to do and really need help. So please please please message or reply.

Im a 18 year old girl and cant live my life because im in constant pain.

Thanks courtney xxx

[Alicepirate]

Oh no sorry you feel so rubbish what did they find or do when you had lap?

[Allyson1]

I could only speak for myself- a typical laparoscopy with fulguration gave me no relief, but diet change and and endocrinologist, and gently fixing some nutritional deficiencies made a huge difference. It is not a miracle cure and I will probably ultimately go back for surgery again, but I consider it the foundation of treatment for me. My pain is greatly reduced from what it was a year ago, and my periods are less debilitating. I was really skeptical about diet change first, but it made a real difference in my pain level. The endocrinologist had me do some minor lifestyle changes and my bladder, period pain, fibrocystic breast pain, intercourse pain, random uterine cramping, fainting, nausea, huge food cravings, weight gain- it's all better.

I know what it is to be debilitated with pain to the point you can't think, and to have no answers. It's a panicky situation. But try to keep a long-term view if you can. I know the pain makes it really difficult, but it sounds like right now you're in an information-gathering stage. This is a good forum.

For immediate pain relief I used a tens or IF unit. It did give moderate relief.

[Courtneylouisse in reply to Allyson1]

Ive tried tens machine and they are useless

[Allyson1 in reply to Courtneylouisse]

It didn't make a difference in my pain level over time, but it replaced the pain with a buzzing sensation for 45 min intervals.

[sophiamcewen in reply to Allyson1]

I'm totally with you! I had relief from homeopathy for 2 years but then it came back and got worse. Trying to conceive and having one laparoscapy after another, and knowing that even an hysterectomy wasn't going to cure it forever, I saw a nutritionist and her advice and supplements helped me no end.

I'm not in pain now even though I still have infertility and heavy periods (and scared to have another laparoscapy in case the pain comes back) but I know nutrition and de-stressing can help.

I want to use this pain free time to help other sufferers by setting up a tailored holistic programme specifically aimed at endometriosis including: Nutrition advice and the supply of supplements, recipes

Reiki and EFT (tapping acupressure points) for pain relief

De-stressing techniques such as meditation and yoga

Personal support and counselling, in person (in North Kent/London) or via skype/phone/email, plus

Homeopathic and Bach flower remedies.

I would be very grateful for your comments on this programme. Would you subscribe? Have you had relief using Reiki or any of these methods? I would be grateful for your input.

With love to all my fellow suffers. My heart goes out to you.

Sophia

X

[Tboag]

Hello, sorry your suffering, especially at such a young age, your gp is unfortunately telling you the wrong info, and endo could quite easily come back after a lot less than 2 years, your was probably operated on by a general gyne, and unfortunately, they tend not to be very experienced in located all endometriosis, so it's very possible that he has missed some, or if he did deal with it all he probably used ablation, which means he burnt the endo off, this is not considered the best process, and there are specialists that use excision surgery, which means cutting the endo from root, you need to be reffered to a bsge centre, look it up online find one near you, and take it to gp, tell him you are not happy with the treatment, and you need to be seen by a specialist, due to your age, would you consider taking someone with you to gp, mum or aunty, perhaps, tell your gp that you have been doing your own research, and it's very possible that it's cone back, or some endo could have been missed, the earlier you get to a specialist the better for your future, be strong, and do your research, look up a lady called Lindle on here, and read her posts, good luck, and keep us informed, xx

[sophiamcewen]

My love my heart goes out to you. Ive been there with the pain and am crying in sympathy coz it brings it all back. Its so tough but you (perhaps with the support of mum or another friend who isn't suffering as tboag suggests) need to fight for better treatment and take this further up the chain. Change doctors, search for a specialist and you may need to have another op to literally clear the root of the problem. It will probably come back though so look at nutrition advice too. I cant go into everything here but email me on [e-mail] and Ill send you what I know and try to help. Let me know where in the country you are. I'm in Kent/London and there are a couple of people I can recommend who helped me. Love, Sophia.

[Hidden]

Hi Courtney - have a read of Lindle's post titled 'How to find an endometriosis specialist centre'. She explains it very clearly and succinctly there, giving details of what to do to get a referral and what your rights and choices are under the NHS Choices scheme.

With regards to your GP - under the 'Good Medical Practice' charter (which all GPs should follow), your GP should be working with you in regards to your care. Your GP cannot and should not be making decisions for you. If you feel that this is what s/he is doing - or as you state, ignoring you - you have the right to make a formal complaint, in the first instance by either speaking with or writing to the practice manager of your GP's surgery. If you receive no response or don't feel you've achieved the result you were expecting, then you can contact PALS (in England only) and take it to the NHS complaints department for further action.

Your GP is very misguided in telling you that your endometriosis wouldn't come back this quickly. Endometriosis is a disease which is inconspicuous and as such can only be properly diagnosed via laparoscopy. Also, everyone is different - for example, I was lucky that I went nearly 4 years without any problems after my first laparoscopic procedure, but after my second I started having symptoms again after only 7 months. If you are suffering with daily pain then again your GP should be working with you to help manage this, ideally by referring you to a pain management centre where you will be properly assessed and the right pain medication prescribed to you based on the kind of pain you have, how often you experience it and the level of impact it has on your day-to-day life.

As you're only 18 years old, you potentially have many more years ahead of you dealing with endometriosis and all the issues it can cause, so finding a supportive GP and an endo specialist now will save you a lifetime of worry and anxiety. But please don't be disheartened - you can live a full and happy life with this disease, but a lot does depend on having the strength to vocalise what you want (and are legally entitled to) and sticking to it despite what others may be saying to the contrary.

If you don't feel confident enough to approach your doctor alone, try taking someone with you (your mum, an aunt or close friend) who can provide support and take notes on your behalf (if necessary). Also I find it helps to write down everything you're feeling - both emotionally and physically - as this will help not only to get things in some sort of order in your head, but will be helpful for the person who goes with you. And it should ensure you don't miss a key piece of information.

Try not to get too downhearted - I know it can feel like a constant uphill struggle sometimes, but just remember you're not alone and with the right level of care you will start to see improvements.

[kerri-]

I got told that my endo would never come back after my lap, But i was always in pain so i changed specialist and was told endo never goes away, Im on buserelin acetate spray which puts your body in early menopause not sure if you could get it with being so young, But it does give you a rest from the pain of endo , wheat bags are amazing and be careful with codine getting hooked on it is the worst experience . Try your gp again and tell them you need to see a specialist be firm gps have no idea what endo is im sure u could tell them more about endo than what they already know.

Good luck