At the beginning and dreading it

Hi everyone

I'm new to the site and looking for support. I'm 23 years old and have suffered painful and heavy periods from the very beginning. Always felt like I was fobbed off whenever I went the doctors. At first I was put on the combined pill which helped a lot but after couple years I had to be taken off due to migraines. That's when the problems really started.

My periods became a nightmare. They were so painful I would get no sleep, couldn't eat, couldn't move and I would just vomit and shake. My doctor sent me for an ultrasound and I was diagnosed with polycystic ovaries and they questioned endometriosis but there was no further investigation.

For years I put up with it, tried the arm implant and the mini pill but ended up bleeding for almost a year so I gave up. I was at university at the time so life was stressful enough. I even started getting into trouble with work for taking so much time off.

This year after numerous visits they finally sent me for another ultrasound and started me on a low dose combined pill. Before I got the results I was rushed into hospital a month later and had emergency surgery. A cyst had ruptured on my ovaries.

Since then I'm told there are no more signs of polycystic ovaries but now they're finally treating me for endometriosis. I'm currently waiting for a laparoscopy. Having to wait as I had one few months ago when I was rushed in. I have had a hysteroscopy, an ultrasound and a colposcopy so I'd like to think it's being dealt with for the first time after years of complaining. Although every consultant I see reminds me how young I am to be going through this and call me an anomaly.

Even though I'm currently under investigation I'm still suffering in the mean time. Dreading the idea of more operations. I wish there was a quick solution. Not to mention all the worrying I do over my job!

I know I'm not the only one out there but when no one else close to me suffers I sometimes feel I may be seen as dramatic. All I want is some understanding.

I appreciate anyone who takes the time to read this. I feel like all I do lately is complain to people who don't fully understand.

8 Replies

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  • Hi emma-e. I am so sorry to hear you have had such a rough time. I know it is really hard to stay positive when we we are dealing with so much unknown and in pain. I have found help with Sophrology this year and this has helped me to have a much more positive outlook towards my body and my life, past present and future. I have posted a little about Sophrology on this site this morning and hope to run a small class in the new year for my Diploma if you are interested and the best bit is that we are all going to understand the difficulties with Endo all be it we all suffer to differing degrees. It is designed to be a very positive experience to try and take some of the negativity away from Endo and therefore promote some emotional wellbeing. That way we cope a little better. Endo can make us feel so vulnerable in so many ways but it has also been a great teacher to me. Keep strong and feel free to contact me.

    Big hugs. Jen xx

  • Hi Jen

    Thank you for your reply.

    I would definitely like to look into that. I'm willing to try anything at this point! I never knew how much something could have an impact on my daily life. It's definitely taught me to appreciate all the little things!

    Emma xx

  • Ok Emma, that's great my email is jenickbesom@yahoo.co.uk. If you email me and then I can let you know when we have enough people together and we can arrange a time convenient to everyone for a Skype call. How does that sound to you?

    Big hugs

    Jen xx

  • Hi Emma! I am 21 and have had similar problems. I had a laparoscopy last year and had the mirena coil put in which has been really good. But after about 6 months I started to get symptoms again and so they put me on norethisterone as well to "top up" the mirena. but now my endo pain is gradually coming back. I am totally at a loss as to what to do- it doesn't feel like i have any other options left but to just grin and bear it so i haven't told anyone its starting to come back. It feels like whatever happens, the endo will just come back. Has anyone tried any painkillers or alternative therapies that have helped them to just get through it?

  • Hi I'm sorry to hear you haven't had any luck with the coil :( I really don't want to get the coil I haven't heard any success stories but it's the only alternative I've been given if the pill doesn't work, which it isn't!

    Really hope you find something that works for you so please don't just grin and bear it! xx

  • trust me you are not abnormally young. I am 22, my friend who suffers is 19, and i work in a hospital where we routinely carry out ablation on under 30's so worry not :)

    ive not been diagnosed yet, but got my lap on 18th theye subjected me to pretty much the same tests it appears you have had over the years - hope you feel better soon. i always feel like im whinging to people too, but my partner has been amazing and i dont think i would have got through it all without his support xxx

  • Hi Emma,

    Hope your feeling a bit better today!

    Im also 23, and was diagnosed with mild endo in June (although i hate the way its classed as mild especially the pain i've been in!) I haven't always suffered from heavy and painful periods, they started for me when i was around 15/16. I too would be in an awful amount of pain, where i wouldn't want to move, and was feeling nauseous too! I went to the gp who wanted to put me on the combined pill, but i too suffer with migraines and so this was immediately ruled out. Its been 7 years since i was started on the pill, and i have gone through 6 different types as none of them seem to agree with me - either making me have brown discharge for 2 weeks out of every month with never ending pain, or anxiety attacks are the latest for me.

    I was advised after having my lap, to have the coil put in at my GP surgery, but i have refused this as an option. I would much rather be in pain and have periods than put up with something foreign in me - especially as its the same hormones as the pills i have previously been on and had horrible side effects. My gp understands though and has agreed to try me on another pill, so I've currently stopped taking my pill to give my body the chance to have a proper period before starting all over again. Fingers crossed this one will help!

    I hope you get a date for your lap soon, and in the meantime your pain isn't too bad :( Please don't feel your alone in it, because theres so many of us out there. I too feel like all i do is complain over this and how no one understands, but the ladies on this site are amazing, and definitely make you feel better!

    Emma Xx

  • Thanks for all the kind words guys! Some days I am beyond fed up felt like I have got nowhere for years and only just recently someone is finally listening but only after I had emergency op!

    I go back to see consultant in February so hopefully I'll have a lap not long after. Seem to be getting worse in the mean time though. I'm very lucky to have my amazing family and partner supporting me, even if they don't always fully understand xxx

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