suspected endometriosis

Hi I’m new here and wanted some advice.So for years now I have been suspected on having endometriosis and I just wanted to know what other peoples symptoms may of been just so I can see if I relate to any of them.I am 17 years old and have now been dealing with my issues for 6 years and they think medication is the answer when really nothing is working.If anyone can give advice on what I could also do to get help faster it would be great

[Dee_EndoUK Moderator Endometriosis UK]

Hi xcezzax

A really warm welcome to the forum! From the information you've given, it sounds like you're yet to receive a diagnosis and you may find several documents on our website useful for this.

First of all, we have a fairly comprehensive list of symptoms that can be found here: endometriosis-uk.org/symptoms

We also have a pain and symptom diary that you can fill in and take to your doctor - this can be found here: endometriosis-uk.org/visiti...

Finally, we have a 'Getting Diagnosed Information Pack' which contains lots of information about talking to your doctor and what to do if you feel you're unsatisfied with the treatment you're receiving. This can be found here: endometriosis-uk.org/gettin...

In addition, along with our forum we also have face-to-face support groups all over the UK where you can discuss your symptoms and the issues you are facing with other people who have personal experience of endometriosis. You can find out if there's one in your area by visiting endometriosis-uk.org/find-a.... If there's not one in your area, we also have an online support group that's separate to the forum.

Wishing you all the best x

[Hidden in reply to Dee_EndoUK]

Well my symptoms are extremely heavy periods I tend to leak through my clothes and go through a lot more pads than I should.I have severe period pains and also severe lower back pain.I either get diarrhoea,sickness or constipation or all three in the space of a few hours or days.New things that I’ve started getting is lightheaded,dizzy due to all these different problems I’m getting it stops me from going to work and doing day to day activities.My period has now been non-stop for 2 years I haven’t had a break from it at all and a lot of doctors just think I’m a bit loopy in the head but if they felt the pain I was in maybe they would understand.

[Endo35 in reply to Hidden]

I had this at your age, you need to find a good understanding doctor and you have to be forceful in asking to be checked for endo. For the time being a good progesterone based contraceptive pill will help along with methanamic acid tablets to help stem the flow with the bleeding.. its a long road to diagnosis and treatment but once your on it then its easier

[Hidden in reply to Endo35]

See that’s my issue I’ve tried every contraception they have given me with mefenamic acid and still it doesn’t work so I’m a bit stuck.And every time I’ve pushed the doctors to try and help they just think that I’m crazy and there isn’t anything wrong all because I’m 17 and according to them ‘I’m too young’ to have anything wrong with me.

[Endo35 in reply to Hidden]

Don't give up! I was diagnosed at 15! You really have to stamp and tell them that there is something wrong, it's hard to get them to listen which is a shame, you have got this I know how hard it is I have been there make them listen. In the interim make sure that you are eating a lot of iron rich food I really wish you all the best..

[Hidden in reply to Endo35]

So I have very good news on the 27th September I have got an appointment with the gynaecology department.I am so grateful and happy that I didn’t have to wait for ages and with all the encouragement on putting my foot down to them Im finally (well fingers crossed) gunna get the help I need 

[Endo35 in reply to Hidden]

i am so pleased for you! You know your body and you have to tell gyne that you know something is wrong, stay strong and let us know how you get in! Good luck xxx

[Hidden in reply to Endo35]

So to give an update,I had my appointment with the doctor today and if I’m honest it was the worst experience of my life.The doctor I had was extremely rude and he also wasn’t very interested in everything going on.The only good part is that I am now on the waiting list for a laparoscopy,however,he believes that because nothing was found on my ultrasound or in my blood and urine that nothing is wrong with me and that I will likely have to go on contraception again which does not work.To add on to this as an edit has anyone ever received a letter from physiotherapy saying you’re on the waiting list because I did and I only went to the hospital yesterday.Are they related to each other?

[Dee_EndoUK Moderator Endometriosis UK]

Hi xcezzax

Sorry to hear you had such an unpleasant experience with your doctor. Everyone is entitled to be treated with compassion and understanding, so you are well within your rights to ask for a referral. Your GP is not a specialist in endometriosis, so it may be helpful to get referred to someone who is. More information about this process can be found in our 'Getting Diagnosed Information Pack' - link in previous message.

As you say, the good news is that you are now on the waiting list for a laparoscopy, which is an excellent way of diagnosing and can also be used for treating endometriosis.

Wishing you all the best x