So fed up....

[gemp54]

Hi ladies, so I haven't been diagnosed with endometriosis but having looked at the endometriosis uk website i seem to have 90% of the symptoms. I've always had hormonal problems (not getting on well with certain pills, spotting between periods etc) and when i came off the pill after my first child was born i realised i had really erratic periods. After the birth of my second child 8months ago I've had really erratic bleeding and in December I had a month long period so i saw a doctor. I've had tests for infections (all clear), an internal and external scan (nothing showing except cysts on my right ovary-told it might be pcos). It was put down to being hormonal so I was put on norethesterone (which stopped it as long as I take it 3times a day) and then told to start feanolla contraceptive pill but on that I've been bleeding again-so far 10 days out of 15. I know they said I need to give this 3months to settle in but the thing is I'm not convinced this is just hormonal. I've also had horrible lower back, hip and pelvic pain on and off for 8 months-usually when bleeding- and recently its been non stop and its driving me mad. I dont think I can handle giving this pill another 2 1/2 months only to find it doesn't work. I feel awful and no matter what I say to the doctors they just tell me to bear with it. I know this is a pointless post but I just feel like I need to talk to someone. I dont feel I can stand feeling like this anymore. I'm in so much pain and i just want someone to take me seriously. I've called the doctors again today to explain to them how I feel but I just dont feel like any good will come of it. They should be ringing me back in an hour or so but I have no faith in my doctors anymore. I would try another doctor but I've now seen all of them at my surgery and there isn't another surgery I can go to. Sorry for the pointless post but I just needed to get it out!

[angelyn]

Hey there

I can really sympathise with your situation. My symptoms started about a year ago..they've gotten progressively worse.

I was lucky in that my GP suspected endo and referred me. However the first gynae I saw told me to get a mirena at the walk in centre and come back in six months. She also told me that my pain wasn't cyclical enough to be endo and that most people with endo don't describe burning pain.

I was so upset that day because I thought there's no way in he'll I can last 6 months like this. So I got a private appointment and took someone with me to that app. If you can afford it I would recommend it..usually around £150/ £180 near me.

Anyway I had lap last Christmas and that gynae was wrong because they found endo on my bladder. I had mirena fitted during lap. Unfortunately my pain is now every day,I've developed kidney pain which is under investigation, I've been unable to work and struggle to fall asleep or I wake up from the pain.

I would definitely recommend booking in regularly with your gp. They should at least be providing you with painkillers. I'm current on tramadol, naproxin and amytryptaline. I will be going back to gp as I'm still in pain.

I know exactly how you feel..that first appointment made me feel do disheartened and my pain dismissed as nothing,even after I told them I'd had 2 broken bones that hurt less than this. I honestly couldn't imagine another 6 months of living like that trying out a mirena even though an implanon never stopped my periods (it has higher dosage of the progesterone).

It sounds to me like your gp doesn't want to refer you to a gynae. My ultrasound showed fuck all. The ONLY way to diagnose endo is with a laporoscopy. Remember that gps are now comissioning the services,so they will try anything in order to keep from referring you to a consultant unless they absolutely have to. They are also following some shit government flowchart (NICE guidelines) which say they have to offer you hormones/mirena before lap is considered. In my own experience everyone tried to force a mirena onto me and it wasn't explained that I had a choice to decline it. I compromised and had mirena fitted during lap.The irony is that because I'm in pain everyday,my endo is on my bladder and the mirena hormones stay within the womb, the mirena wont help anyway. I'm awaiting an mri and then a 2nd surgery is likely.

So don't give up!you deserve treatment! 1.Take someone with you to appointments

2.Fill in a calender with your symptoms

3.Get a private app if you can. I think sometimes they think if you are willing to pay for an appointment you must be in real pain.

4.In the mean time your gp will need to provide you with appropriate pain relief.

5. Know what you expect to get out of the appointment before you see them. I knew I that I wanted to push for a lap and that was my aim in that private app.

6. Don't be afraid to accept help. (My GP knows I had pretty serious depression a few years back. I was on trazodine and had 3 years counselling. I'm a proud person and tend to just carry on even if I'm ill/tired/sad etc. So when my GP asked if antidepressants might be needed, I told her that at the moment I am coping, but if this goes on longer I may need to consider it.)

I know how absolutely awful it can be. I'm tired of being in pain and tired of being a medical mystery. I certainly struggle at the moment. What I'm trying to say is you know your body . Put your armor and your war paint on before each app. Take someone with you who can objectively describe your pain from their perspective, and they need to stand up for you, especially when you have lost the will to fight.

sending a massive hug

Xx

[gemp54 in reply to angelyn]

Thanks so much for your replies. I now have blood tests booked in tomorrow although they did say that as they'd asked me to go on the progesterone pill it might not truly reflect my hormone levels. I came off it 2days ago now because I was so fed up of all the side effects (starting to get overheated and sweaty at night, greasy hair and skin, irritable etc). They wanted me to try it for 3months but I really couldnt put up with that any longer. Amazingly since I've come off it I've had no bleeding and the pelvic and back pain seems so much better (although not completely gone) so I'm sure the back pain is related. Hopefully the blood tests tomorrow will shed some light, if not I have a follow up appointment already booked a week on Friday to discuss the results and next steps. Thanks so much for responding, it really gives me motivation to keep pushing for answers! X

[angelyn]

P'S cysts on your ovaries could be endometriomas, which is a cyst caused by endo.my friend had these show up in an ultrasound and they were from her endo.

In addition,if they want to diagnose PCOS then they should check your hormone levels in a blood test, and be asking about other symptoms like abnormal hair growth etc. In fact if they want to blame anything on hormones this should be clearly visible in a blood test..if they haven't done that they may be trying to fob you off.

Also don't let the fob you off with IBS. They tried that with me even though I had now bowel symptoms at all.