19 years old, finally getting a doctor to listen and feeling very scared...

[sb95-omo]

Hi there, I need some help and advice from you lovely ladies. I'm 19 years old, uni student and have had irregular and very painful periods since starting them in January 2008 (on and off every 2/3 months). I still currently have very irregular periods and horrendous period pain both during and before my period and heavy bleeding throughout most of my period.

Pain - All over lower abdomen, lower back near kidneys, and when on first day of period right on my cervix and lower area, struggle to stand at times, feeling faint and light-headed at times and not always when on my period.

I've had 5 ultrasound scans done in the past 4 years and they've all said various things including; possible Poly Cystic Ovaries Syndrome, Immature Adolescent ovaries and varying degrees of ovarian cyst's but no clear diagnosis. I've been on the pill September 2013 - February 2014 and had light regular periods and a large clump of what can only be described as white cells. I told my GP and he said it was just the lining of my womb as I hadn't had a period in a while. After coming off the pill in Feb 2014 I had 2 periods in the rest of 2014 and 2 in 2015. I move to uni in September 2014 so went to see my GP here and told her everything. She did lots of blood work, and got my notes from my GP back home and thought I had Endo rather than PCOS. She referred me to a gynaecologist who was an ST4 Level. She was horrible and didn't listen to anything I said. I'm training to be a primary school teacher and want to be able to have children in the future. I said this and she completely dismissed my point, said there was no point looking into Endo as I'd have to have all those tests done if I have fertility issues and said I shouldn't be worried about having kids right now and that I had all my time ahead of me. That she had lots of experience and I had loads of time. Needless to say I came out of the appointment feeling horrible and it has seriously put me off going back. Although my GP has said she will write me a letter saying I have to see the consultant/Professor and not his registrar I am still uncertain about going back.

The registrar wrote to my GP saying I was to go on a combined pill which should sort everything out. I started the pill in may and this is not what has happened. I am still having horrendous period pains, just much lighter periods. I'm to go back in August and see the consultant.

Also I have had some anal bleeding since starting the pill in May and have had lots of constipations around my period.

Any advice on how to deal with consultants, what could ease the pain I feel or advice on anything would be mostly appreciated please! Like I said, I'm 19 years old, want to have kids later in life and am struggling to come to terms with what I could actually have wrong with me. My GP says one thing, the registrar says another, I'm starting to think I could have cancer or something worse. - I may be being melodramatic but I'm lost and desperately need some advice please!

Thank you in advance!

[shannonnel]

Hi, I desperately in need of help aswell! I'm 19 too and literally everything you have described, every pain and every symptom is me down to a tee. I've been suffering from excruciating pain from 12 years old when my periods began and like you I've had nearly every test under the sun, I've had 7 ultrasounds and I've been on practically every pill the doctor said she could put me on? The only one that ever helped was dianette (really helped with the heavy/ bad periods though the pain was still there for sure). I spent so many days off school growing up, especially during my time of the month because I literally couldn't get out of bed the pain was that bad and I was so dizzy all the time.

Can I ask if you would get pain (almost like period pain) on a daily basis? Lower abdomen, almost as though razor blades/a knife is stabbing you between your legs? I would also occasionally feel as though my ovaries are being ripped out, it sounds so weird but I can feel them! I was always told that this was IBS, which I've only recently found out that endometriosis is often wrongly diagnosed (obviously an easier way out) with IBS...

The only other thing that I was told would work (unfortunately it hasn't) was the mirena coil. At first my gynae was reluctant to insert it and instead put me on a load of different tablets which of course didn't help.. A year or so after she finally came to the conclusion that it could be endometriosis (my mum had researched it ages before and proposed this idea to both the GP and gynae, both of whom shrugged off the idea at the time). I finally ended up getting the mirena coil inserted under anaesthetic last August because it's rare to get it inserted unless you've had children due to your cervix softening during child birth.. I was told this would help with heavy periods (as you wouldn't get them) and therefore wouldn't suffer from the associated pain. I honestly thought it would be the answer to my prayers but unfortunately it wasn't. I reacted really badly with it when it was inserted and ended up soaking an entire hospital gown with blood and had to stay 6 hours longer than intended in the day surgery.. I still bleed every single day, still suffer from bad pain, I've gained a stone, my acne has come back even worse than before and my mood swings are awful! I'm currently on the waiting list to have it removed and go back on dianette. It's not really ideal because I'll still be suffering pain wise and bleeding but atleast it will minimise the other symptoms until I can actually find a cure/ another way to help.

Even though the mirena hasn't worked for me, there is a really high success rate linked to endo sufferers so it might be worth a try?

I've similarly had really bad experiences with the healthcare profession to the point where they've made me feel as though I've made it all up in my head! Its only been recently (after like 7 years of going back and forth) that they've finally listened..I'm just gutted that the only thing that was suggested to me hasn't helped at all. Also, please don't be worried with anal bleeding - I often get that especially coming up to my cycle. Just obviously send in a sample to your GP to clarify that all is well. As for consultants, my mum has ended up having to do the research prior to any appointments so a huge tip is go in there knowing what you're talking about. Try and use this forum to find out any medication/ procedures other sufferers have had and present that info to your doctor/ consultant - but you need to be persistent with it.

I wish you all the best and hopefully they find a treatment that will ease the pain someday! xx

[sb95-omo in reply to shannonnel]

Thank you for sharing your experience! It's reassuring to know that it's not just me these things are happening to... Although wouldn't wish this on anyone. Reading this has been really informative and had given me info and questions to ask the consultant! Thank you! xx

[SugarSkullGirl88]

My story is pretty much identical to yours except it started younger it wasn't until I was in my early twenties that doctors listened to what I was saying I printed a symptoms sheet and brandished it in their face after trying multiple pills and was referred to hospital where they carried out laparoscopy procedure and found endometriosis (this happened fairly quickly). You have to fight to be heard sometimes especially when you're young but the fight is worth it. after this procedure I lived happily pain free for 2yrs and have been receiving help since from various services and support groups

Feel free to ask any questions.

For me actually changing GPs helped. Too

Good luck. I hope this helps

Sorry you're having such a rough time

[sb95-omo in reply to SugarSkullGirl88]

Thank you for your help, I will take your comments on board and see how my next appointment goes. Thank you!

[shannonnel]

Thanks so much! It's been great help, so informative! Xx

[sb95-omo]

Thank you for all your comments ladies! It's been really informative for me and I feel more reassured that I'm not the only one with these symptoms... even though it's not good that we're having them. I've recently been back to my doctor and we're going to wait until I've seen the consultant in September before deciding to move me to a specialist. Hopefully this consultant will listen and understand what I'm saying.

Thanks again!

[sb95-omo]

Thank you for your advice, I've read your articles and there very informative! Sorry I haven't gotten back to you earlier, I didn't realise until a few days ago that people had replied to me! x