what can i do?

[jill2012]

i have al the symptoms of endometriosis but my gynacoligist give me the marina coil. the pains are just worse nothing will take them away and it is effecting my work and life style. is the anything i can do??

[dknees4]

I totally empathize with you. My experience has taught me to be very pro-active in my health care. There is so much that primary care physicians are not taught, and many are not interested when you bring documentation to their attention. In your case you "must" always insist on seeing a specialist. I learned about my condition by going on the John Hopkins website. I printed out the info, took it to my primary care doc & her response was, "you can't believe stuff on the internet & that diagnosis does not exist." This incident told me a lot. The printout from John Hopkins said I must see a urogynocologist. (had never heard of this specialty). He told me, "this is exactly what you have." Since that time, (2006), I do not rely on a primary care for complex info. I do research on my symptoms from well known & respected medical institutions & research centers. Then I take their advice & see the specialist they have suggested. Doctors are human, just like the rest of us. Some good & some not. The main thing I would suggest you remember is the word, "PROACTIVE." May your pain lessen & your knowledge increase.

[pelvicmessenger]

Get a new Doctor....and do your research. Dont take an answer from a doctor that is clearly not listening to you and doesn't know ANYTHING about chronic pelvic pain.

We are at a 12 yr average on women getting an endometriosis diagnose...TOO LONG. Personally for me , it was 24 yrs.

In addition there are multiple pelvic diseases and syndromes which all have them same symptoms....so you really need a specialist

elisabethoas.com/pelvicfreedom

listen to my shows -all past ones are on-demand/archived

blogtalkradio.com/pelvicmes...

I am the patient advocate for the IPPS- also which can help you...and you should encourage your doctor to join , so that he or she can better serve his pelvic patients

pelvicpain.org

I wish you the very best.

[PPSN_JudyB Pelvic Pain Support Netwo]

Jill,

What part of the country do you live in ? I looked to see if you have marked your location on the map on this site.The Mirena was originally developed to prevent heavy bleeding. More recently it is also being used for dysmenorrhoea ( painful periods ) and endometriosis. However many patients are reporting that it helps with bleeding but not with pain. Many of them are using other treatments as well as the Mirena. However they have a diagnosis. It sounds as though you are not happy about the situation. Have you had an ultrasound scan ? This is more useful if it is done before you are referred to a specialist. It's not so easy to get a referral to an appropriate specialist in our country but I am working hard on this through PPSN ( the charity that runs this site ) and contributing to the development of a pelvic pain patient pathway for all of these conditions. I know of several specialists who may be able to help depending on where you live. The length of time to diagnosis of endometriosis is about 6-7 years in the UK and less in some other European countries but it's still a long time.

Have you read the information page ?

pelvicpain.org.uk/index.php...

If a laparoscopy is suggested it is worth reading the page above and asking whether any areas of endometriosis found will be removed at the same time.

Good luck and let us know how you get on.

[Miche]

I agree with Pelvic messenger and PPSN JudyB,

I suffered with your symptoms also and had the mirena coil but that was for the heavy bleeding not the pain, for pain i was on Tramadol.

Change your Dr as they dont seem to understand what is going on or even listening to what you are telling them, its so unfair.

The websites that have been recommended and radio shows are really helpful.

Good luck and i also would be interested in hearing how you are getting on

Miche x

[jill2012]

i live in newcastle upon tyne. i have seen the gynacologist but she was useless. i actually dont no what to do i am only 20 and i have been suffering from this from a early age i have asked for tablets for the pain ut they speak to me as if im a child and tell me to take paracetamol (definetly does not work). thankyou for you concern's xx

[PPSN_JudyB Pelvic Pain Support Netwo]

Jill,

I know a couple of people in Middlesborough you could ask to be referred to. One is a gynaecologist, the other a pain specialist.

If you e-mail me : [e-mail] , I can suggest how you can go about this. Is your GP understanding/willing to refer you, if not you may need see a different GP ?