Am I going completely mad- feel completely alone?

[ktp1990]

Hi everyone, just wanted to mention I am completely new to this website and just feel so alone and sorry that this post is so long!

I have been having problems with my periods since I was 14 and I have just turned 24 and over the past few months it has been getting worse.

When I was 14 my periods used to be really irregular and very painful when I had them so my mum suggested when I was 17 to go on to the Pill to try and make my periods regular and a bit lighter. During this time I also used to feel sick and have bouts of diarrhoea on the 1st day of my periods, sometimes it was this that let me know it was about to start!

At first I was put on Microgynon which helped until I was about 20 when I started to have spotting and so my doctor told me to come off them for 6 months. During this time I used to get pain but no periods at all (if it helps I am underweight- I am 5"7 and 50kgs but I have been naturally like this for over 7 years and my mum was naturally slim).

Therefore I went back to the doctor and said I have had no periods so they put me onto Logynon- again this worked until last April when the bleeding started again and had a bout of diarrhoea with my period, usually if it's one way or the other it is generally normal-constipation.

So I saw my doctor and they asked me to have an abdominal ultrasound and a trans-vaginal one, on the abdominal one it said one of my ureters was slightly larger but my trans-vaginal one was negative with no signs of ovarian cysts or anything so my doctor just said it was just IBS but I felt there was more to it than that. At this point I was still taking the Logynon. Sex with my bf was so painful as well but as he is my only partner I thought it was normal but it is getting so much worse.

Then in February it got much worse. Mid-cycle I would start having higher bowel frequency, going 3-4 times a day but not diarrhoea just normal and in early March I had such horrendous cramps with my period that I was bedridden and couldn't go to work. Went to work the next day and looked terrible so I got sent home being told to go to the doctor. He gave me new contraceptive pills (Rigevidon-new Microgynon) and since then I have had dark discharge almost everyday, really pinky brown (sorry TMI)

Then in April, I got struck with such severe pelvic pain around mid-cycle that I had to go to hospital and got sent home saying it was IBS. Was back the next day because I was in agony and noticed the discharge was still there and mentioned it and said I need to be checked for STI's (my bf and I were both virigns and have been faithful). Therefore I went to my GP as an emergency as I was still in agony and he did a pelvic exam which was so painful as he was doing the swabs to test for infection that he couldn't even do the cervical smear (which he told me shouldn't be necessary as I am under 25). Gave me antibiotics in case it was an infection but didn't feel any better and by this point I had been off work for almost 2 weeks due to the pain. Results came back negative and was referred for another trans-vaginal ultrasound which also came back normal.

I have also obtained a copy of my GP notes as I was trying to process a medical insurance claim through my private insurance to see a gynae (wasn't successful) and they said they suspect it could be endometriosis? I have asked the doctors outright if it could be this as my u/s came back clear and they said yes but that they didn't want to refer me yet as they will just ask me to take different pills like the doctor has asked me to. I am now on my 4th change of pill (Marvelon) and still have the discharge and still have horrendous pain which I have to grin and bear, use painkillers and heat patches for.

I just feel so alone as it is impacting on everything, my bf is amazing but I want to be able to have sex with him and not have him feel guilty that he is hurting me, being off sick from work because of the pain and I don't even want to make plans in case I fall sick.

Does this sound familiar to anyone? Could it be endometriosis? How can I get my doctor to refer me to an endometriosis specialist?

Thank you so much for taking the time to read this.

[Bluetit]

It could be endometriosis, it took me 8 years before I was diagnosed due to the doctor wanting to try different tablets and not wanting to refer me to gynae. In the end after some advice from a friend who's daughter had to have part of her bowel removed due to endo I went to the gp with the intention of not leaving until I was referred. I saw a different doctor to my usual one who after a little bit of persuasion referred me. If your not happy with your gps answers see a different one or swap gps. If you are in bad health it is important to get on with your gp and have a good relationship with them. I've since swapped doctor surgeries as I moved and I actually could not be happier with my doctor now she is amazing.

[Elwood]

Hi There, yes this all sounds familliar, I had terrible symptoms for 12 years before I was diagnosed and that was only because I struck it lucky with a locum at my doctors who was actually a gynae!! I think you need to speak to your GP again, they just don't seem to know anything about the disease and can be on occasion quite dismissive, put your foot down you can't go on like this. I have never been told by an OBGYN to take a load of different pills! All the pill does is mask the symptoms, it is not a cure nor a preventative. It's worth noting that the reason why Endo has to be diagnosed by laparoscopy is because its not usually spotted on scans. I hope you get your answers soon, always here if you need advice xx

[Flowerpot23]

Hey

First of all you are not going mad! Your story sounds very much like my own. I am 23 and was diagnosed with endometriosis 2 years ago. I have been with my boyfriend for 7 years and like you we were both virgins and both have been faithful throughout our relationship. I started my periods when I was 11. From the age of 18 sex has been extremely painful - I though that was normal as it is all I have ever know - but now I know otherwise. My boyfriend is fantastic and like yours he feels guilty for hurting me and as you probably know it leads to sex being miserable. I started having pelvic pain when I was 21 and after about 10 weeks mentioned it to my mum and was subsequently sent straight to the gp! They first of all told me I needed an internal vaginal examination which was awful. I was only 21 so had never had a smear etc and the doctor was just vile. She accused me of sleeping around and said I probably had various STD's like ''most girls my age!" Anyway after all those swabs were clear I was sent to the womens hospital for a pelvic ultrasound. That was clear too. I was told I had IBS when I was a child so that was also put in as an explanation. I go through phases of having constipation and then diarrhoea. So after the scan was clear I went back to my gp and he suspected endometriosis and refered me to the women's hospital. I had a diagnostic laparoscopy in July 2012 which diagnosed endometriosis. I was put onto Prostap (a hormonal treatment which puts your body into an early menopause) which didn't work and then put on the pill for about a year. This was also unsuccessful in reducing my pain (which is pretty bad - I'm on tramadol, naproxen And morphine patches) my doctor then put me back on Prostap to find 6 months later it still hadn't done anything. I was refered to a colorectal surgeon and had a colonoscopy which was most unpleasant which was also clear. I was so fed up by this time I got a second opinion from a private doctor who said they should have removed the endo when they first found it and he then refered me to Someone else at the women's. I also saw a urogyaencologist who did a cystoscopy and bladder Botox which helped a tiny bit but no where near enough to come off the painkillers. My new consultant saw me and immediately said I needed the endo excised (this was back in feb this year) and I am finally having my endo surgery on Monday!! Sex still hurts and pelvic pain is pretty bad but fingers crossed Monday is the start of a better future!! Don't give up ... Insist on being refered to a gynaecologist and don't take no for an answer! It's a good idea to take someone with you to your appts because there's so much to take in. My mum and boyfriend have been fantastic throughout the whole thing I wouldn't have managed without them - or chocolate!! I hope you get sorted x

[Vickal]

Sounds like you really need a referral to a gynaecologist. For at least 4 years I was just prescribed painkillers for my pain and told my symptoms (intense cramping, diarrhoea with period, heavy bleeding, ovulation (mid cycle) pain) were normal by my GP. Finally saw a different doctor and told her my full story which she listened too and then said ‘well that’s just rotten isn’t it!’ and gave me a referral there and then. I could have cried knowing that someone was finally listening to me. My trans-virginal ultrasound didn’t show my endo but it did show some cysts. I then had a laparoscopy which showed endo on my bladder, uterus, ovaries, p.o.d. and appendix.

You’re not going mad, it does sound like there is something not right, you just need to see the right Doctors to diagnose and help you. There are lots of ladies with similar stories on this forum. Ask to see a different GP.

Don’t worry too much, there is lots that can be done to help you from medication to surgery and you’re guaranteed to find someone here who has been through what you’re going through!

I was told that my endo can’t be surgically removed as they could risk damaging my bladder or my uterus. My pain is no better since I was diagnosed but it is a massive mental relief to know that I’m not mad and can at least put a name to the problem. It has also enabled me to have a frank conversation with my work about my on going pain and sickness. They have been really supportive.

I hope things get better for you. Remember you have lots of support here xx

[ktp1990]

Thank you all so much for all of your help. I am definitely going to try and get to my GP to get a referral done but it's really nice to talk to people who understand as sometimes even though everyone is being supportive, I just feel like a broken record and end up probably isolating myself when I shouldn't. Thank you