Getting nowhere and struggling to cope

[Albeon]

Honestly don't know where to start. Symptoms became bad enough earlier this year for me to start going to Drs to find out what was wrong, kept getting told it's all in my head but they did the rigmarole of a smear, ultrasound urine test etc to find nothing. I even went to a sexual health clinic just to rule out infection. So embarrassing, they told me it must be thrush even though it clearly isn't. Everyone around me medical professionals and otherwise telling me I must be depressed. Pretty sure anyone would feel a bit glum if their periods lasted over 3 weeks, their genitals were in constant burning pain and at times became so inflamed they could barely walk? Anyway, persevered since I'm fairly tough, barely slept for about 4 months but finally diagnosed myself ( although I know it has to be seen for official diagnosis). I'm absolutely staggered that this hasn't been picked up despite my symptoms, I actually can barely come to terms with the fact that I had to diagnose myself. If I hadn't bothered doing the research, I'd currently be in so much more pain (at first they told me I couldn't even have the pill because 'it would mask symptons when they're unsure of what it is') and I'd probably have had to accept that it was all in my head? Bull.

Finally got referred to a gynae, but at Lancaster Royal (UK) and I understand they're not BGSE accredited. Anyway, he told me to let the pill (microgynon) take effect- I've been on it a few months now and although it's eased symptoms I'm still suffering quite a lot. And he said we'll review it in 6 months. I'm really not sure if that's the right thing to do though, I understand that a lap is surgery and it's best to avoid any surgery if possible, but I really don't feel confident that they have listened to my problems and made a balanced decision yet. I'm 27 and have no children, I haven't ever tried but I would like to hopefully at some point. I'm absolutely terrified that all the inflammation I get is a big sign that I'll be infertile if I try. I know that you can never be certain but I just really don't feel well. It just feels like what's happening to my body is wrong and it's gotten so bad in the space of half a year. The worst part is having no one to talk to about it and not feeling listened to by people who should care ie doctors. For example the last time I went in, to the GP to complain that not only is the pelvic pain not subsiding but I'm having regular bowel problems now too including burning lower back pain and the doctor just said she couldn't refer me to anyone because they will see that I'm already under the care of the gynae I saw earlier. Then she suggested that my back pain might be unrelated and said I could see the practise nurse who does muclelo sceletal work. My heart just dropped at that point when I knew she wasn't going to help me and when I left with nothing but that I just went into the toilet of the practice and cried for a few minutes. I cry a lot these days just when I get a private moment because I'm just so defeated with it all. I feel like I've given it my all and in the end I haven't been able to find help.

Thanks for reading if you managed it all.

[Rockygirl15]

Hey, so sorry to hear that’s how you’re feeling. I completely understand what your going through. I’m 26 and I’ve been going back and forth from the GP for the last few years and got told it was ibs but over the last year I have bled for at least 2-3 weeks then stop for about 10 days and then back to bleeding again, I’m constantly in pain in my pelvis, tummy, lower back, thighs, I’m constantly emotional/annoyed at the slightest thing, I cry and just want to curl up in bed all the time. My GP put me on the pill for the bleeding but if anything I feel that’s made it worse so I eventually got referred to gynae who I had an appointment with last month, she is 99% sure I have Endo so I am now waiting to get a lap and the coil fitted at the same time. I hope that this is able to give you some relief to know you are not the only one, I’ve been reading stories in here for the last week and it’s certainly gave me peace of mind! Keep at it with the GP or gynae, make sure you get seen! You know yourself when your not right, I’ve not been myself for about 4 months now and it makes you feel so low knowing there isn’t anything you can do about it 😔 feel free to private message me if you need to chat about anything. Xx

[Albeon in reply to Rockygirl15]

Hi and thanks for your reply!

Even though it's a horrendous condition, it does help to hear from others who know what it's like. I especially hate how conditions that come under 'women's problems' are often not taken seriously until they have advanced so much they have a massive impact on your life. It's so unfair. I'm sorry to hear that you've been so bad that you've had to stay in bed, no one should have to be in that much pain! And as for being emotional or annoyed that's totally understandable when you're feeling so rotten. I get that too. It's the fighting for basic standards of care that makes it all the more infuriating, it makes me so angry to think that other illnesses are taken more seriously than this when it can affect you so much and have serious complications with other pelvic organs and fertility. I read that it takes an avergage of 8 years to be diagnosed with this from the onset of symptoms, so we haven't done too badly considering!

Good luck with your lap and have a speedy recovery. And thanks again for your kind words, they have really helped.

[Loz98]

That sounds very similar to my situation and I’m sorry it’s happening to you too. I’m 20 I’m in uni and I’ve spent most of the previous academic year in bed. All I’ve learnt is that you have to keep pushing and complaining and being a massive nuisance for people to listen but they do. I wrote a very formal very angry letter of complain to the head of my GP surgery after being brushed off for the first few months and then I was brought in by the head of practice and referred to a gynaecologist straight away. Eventually got there and that was all sweetness and light after having my appointment cancelled twice. When I eventually saw who the one professional I felt could solve my problems they didn’t listen when I said there’s no way I could have a speculum used in me because it would leave me not only in searing pain while they did it (which it did I cried they didn’t seem to care much) but also unable to walk or sit comfortably for days afterwards. After they did that I was busy crying my eyes out and answering questions all at the same time they said yes you sound like you have endo so we shall put you on a waiting list for a lap. Brilliant. At this point I did some more crying because like you I spent a lot of time crying. Got there for my lap quicker than expected and left that day with no diagnosis and no peace of mind. I have adhesions my organs are sticking together but there’s no endometrial tissue. I was discharged not into the care of the gynaecologist but to my gp. Should this ever happen again I’ll at the very least be able to go in and tell them what I know but I’m not convinced I don’t have endo. I feel like they genuinely missed something. I don’t have the greatest confidence in my surgeon. I googled her out of interest and she had two pending court cases for medical negligence.

All I can say is just keep pushing and feel free to give me a message if you want advice about anything. I’ve done it all with no results.

I hope you find out what’s wrong xx

[Confused_con]

I'm so sorry you're going through this, I know how you feel though, the amount of times I have been to the doctors and put on different kinds of medications, it felt like an experiment or something!

Can you afford to go private? I had to in the end as I was in hospital for a week last year before Christmas and they thought my pain was to do with a kidney infection. after numerous scans, MRI's I went private and the doctor believes I am endo. I am now currently waiting for a date for a lap.

You know your own body, keep fighting! If you believe you have endo keep going girl. Unfortunately with this condition as we all know we all have different symptoms which point to the same problem. Do not let them fob you off with IBS or any of that nonsense, keep going!

Feel free to message me anytime if you need to chat, we are all in the same boat and are there for one another. Sending you a big hug right now <3 keep strong xxxxx