I wont waffle, put I just don't know what to do. I've had enough of being ignored/ not listened to by doctors. I've seen a gynaecologist and had an ultrasound. There was nothing to worry about from those, and everyone is just telling me to go on the pill or coil. Should I? My symptoms seem to be unimportant to anyone - hormones are the solution as far as they're concerned. I want answers but I can't take the way I've been treated anymore.
Maybe nothing is wrong and all of this in my head, maybe I'm making a fuss. Should I just agree to have hormones or is it worth asking for a second opinion from the hospital and trying to find out if it is endo? What would you do?
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Hi , I know how your feeling right now. I have been back and forth to GP's , hospitals , had scan after scan and always been told I just fine. 14 years later I have finally diagnosed with endo. I now face an uncertain future in regard to management and treatment as it is so extensive, I am covered in the stuff push for diagnostic surgery until you get answers x
Do you think so? How did you keep going? Maybe I’ve just had a bad run of luck, but of the 4 people I’ve spoken to since my initial referral every single one has said go on the pill/coil. Even though all of my symptoms could point to endo as a possible cause, no one wants to consider it. Even though I’ve tried contraception before and it didn’t agree with me they would rather do that. Everything I want and experience seems to be ignored.
What makes this harder is a girl I live with who has similar symptoms was referred to the same place as me 2 weeks before I was. It hasn’t all been straight forward for her, but her lap is now booked for 2 weeks time and I’m still arguing about the fact I don’t want the coil whether I can have a local anaesthetic with it or not!
Keep insisting that you want a laparoscopy. I wish I had a lot earlier than I did but I was young and thought Doctors slways right. I hope you get the answers you need. x
It’s horrible feeling ignored! I experienced a bit of denial with my endo too, so I was letting the doctors fob me off for a while with “let’s put you back on the pill ” eventually over the years it just got to a point where I felt I really wanted an actual diagnosis and some real answers.The best thing I did was visit the British society of gynaecological endocrinology (BSGE) they have recommended endometriosis specialists you can search for by area location. I found a specialist, paid £200 to see him privately and for the first time felt I was speaking to someone who really cared, had actual explanations for my symptoms and provided multiple options for next steps. Best money I’ve ever spent!
I hope you find what you need, wishing you all the best
Sorry to hear about your troubles, which are sad but unfortunately quite common for us gals.
I've been waiting for 20 years to be listened to & only since joining on here have I had the power of knowledge & the courage to fight my corner. I'm on the waiting list for laparoscopy.
I told my GP that she was fundamentally wrong in her understanding of endometriosis and needed further training. I left her office with a referral & also her telling me it's probably just IBS or grumbling appendix (had that removed in '99),& that I'd most likely be referred back to gastroenterology.
You GP actually cannot refuse to refer you - it is your right as a patient. Your GP is not qualified to diagnose or treat endometriosis - this can only be done via laparoscopy.
Look up the member "Lindle" on here & read her posts, join her FB pages. She's fab & has got a wealth of general & legal information and, although she probably won't be able to reply to individual messages, you'll find all the information you need from her posts.
Don't give up, it's your quality of life at stake, not your GP's.
Hi there, I was in the same boat, I started having pain a over a year ago, went to doctors who kept just doing blood tests and ultrasounds. Some doctors said the pain was in my head without doing other tests. But I pushed on. I did some research online about what it could be, my symptoms matched endometriosis. So I asked to be diagnosed with that about 9 months ago. Saw a gynaecologist who didnt think I had endometriosis. But if I did have it would be at back of my womb as I have pain during sex. They referred me to have an MRI scan which I had two weeks ago. Yesterday I got my results. I have endometriosis and it’s in the back of my womb and in the ligament connected to the sacrum part of pelvis at the base of the spine. Don’t give up! Just keep pushing don’t let the doctors ignore you. Maybe ask for an MRI scan.
I am possibly feeling worse, but I am trying to make things happen now. I called up the gynaecologist asking for an appointment. They didn’t have any at all in any area today so they logged a formal complaint about my last appointment. Now I’m waiting for a call back from the manager and I’m a priority for a cancellation, so hopefully something will happen.
If you are waiting for a cancellation you might not be too long, Just state your symptoms and how you are affected. Keep me informed of how you are. Love from, Della xx
Sounds like you already know you have endo all you have to do is decide what to do about it surgery or hormones diet changes are your only answer you can have surgery but not everyone gets relief if they do it dosent always last your choice lovely if you do what surgery you will have to push for the diagnosis or get a private diagnosis
Hi Afrohair (great name!) I think I know it’s what my symptoms point to, but I don’t know for sure if that makes sense? I don’t even know if I would want surgery, I just want someone to sit down with me, tell me that they agree Endo could be the reason and run through some options. At the moment I don’t feel like anyone is taking me seriously and are happy to ignore my symptoms for the sake of their own agendas. I’m at my wits end but I’ve found a bit of strength from somewhere today to keep fighting.
Aww I totally understand I've been there in the end I opted not to have surgery I'm currently pregnant after being told I would struggle and to have surgery by a lot of people on this site.you need to remember that you know your own body and no one can tell you what it's capable off.I had a misscarrige last year but this year I'm almost 38 weeks gone .I took the option of a private consultation I think you would benefit from this too I was told I had endo and that I could treat it with a hormonal drug I forget the name of it and if I wanted surgery I could but it can return my consultant was firm with telling me this!that endo is out of our control no matter how many surgeries we can only manage with hormones or diet.the endo was felt on exam inside and out my vagina that was enough confirmation for me.I proceeded to look for ways to manage my endo through research im still researching now but it changed my life.I started going on endo diet you could see from my posts about 8 months back I'm hoping to go on the coil later and hope it works for me no one was taking me seriously and just wanted to open me up without giving me treatment they may tell you they will remove it but some people have gone on to be worse off as the nhs don't offer professionals for a first diagnosis it's very stressful to get a diagnosis on the nhs so I understand your anxieties and fears it had me so stressed at the time I would do anything for them to stop the pain I ended up taking things into my own hands meds vitamins wise but it helped me and some other ladies on this site one girl was told her fallopian tubes were blocked and unblocked them naturally without surgery
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push for diagnostic surgery until you get answers x
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