Still waiting in pain. : I've suffered from... - Endometriosis UK

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Still waiting in pain.

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I've suffered from heavy and painful periods from the start, even end up in hospital a couple of times in the beginning. I was given tablets no tests. Simply told we get heavy painful periods. Been anemic for 15 years with iron tablet constant on and off. After having my son they were going to airlift me from home due to the amount of bleeding, but again handed pills and sent home. I've always suffered every other month in severe agony about a 7 on the pain scale and the next month around about 4 or 5. Finally, after a really extreme painful time I called the hospital to be told not to worry hold off and take Paracetamol. Then seen my GP who sent me straight to A and E for suspected ovarion torsion. The A and E nurse triaging that day said "you're a little over dramatic everyone gets bad period pain"!!! Finally I seen a Dr who put a drip in for pain relief 1000mg IV Paracetamol (takes the edge off but doesn't kill the pain) 4. 5 hours later after being kicked out of the emergency room back to waiting area the junior gynae showed.. She took some answers, slightly felt my stomach (I'm chunky so she didn't even push really) she then told me I needed an STD panel, which I've had yearly anyway, just not for several years as I haven't needed to... (girls you understand). I told her this but she was adamant I was just a silly women sleeping around.. Aye with two kids and a bit of dignity 🤦🏼‍♀️. Anyway, she didn't scan my stomach because get this the GP had referred me to gynae for a different issue and she said we don't want to get the outpatients and emergency noted mixed it's better you wait.

Fast forward a fortnight, my GP refused this treatment of my condition and sent me for an urgent ultrasound. Which showed a 7cm mass on my left ovary, an extremely hard to find right ovary oh and a high Ca125 with high testosterone too. Which indicates PCOS too with other symptoms. Been waiting a year since then for an appointment and doubt one will happen soon, had three reviews for a surgery that hasn't happened... Ask for a hysterectomy and was told no.

At my last review one consultant couldn't even find the cyst he had to bring someone else in 🙄 and I've been told ill likely lose the left ovary now.. But they still haven't seen the right one on ultrasound..

A year and it doesn't seem to be progressing this waiting list.. Every time I review its another 12 months. I'm in bits, struggling to live normally.

Even as I right this my left side is throbbing in agony around an average 6 on pain scale but I'm exhausted too. The NHS have left me believing there is no point anymore.. All I get is pills. I want treatment. I want scans, tests whatever.. I'd rather the root treated than sticky plasters everywhere.

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livvi_livvi profile image
livvi_livvi

Im so sorry to hear of your story that is really bad and should not happen.

If you are waiting for a consultant appointment I would advise that you approach PALS in the hospital you will see the consultant. They will be able to review your entire history and should be able to help push to get an appointment.

Like you say you cant keep waiting until the NHS decide to give you an appointment. Unfortunately, us women do have to fight for the treatment we need. I know its a lot of effort but it will be worth it. Usually you can find PALS details on your local hospital website.

Hope you find some treatment soon. Xx

in reply tolivvi_livvi

Aww thank you, I'm quite alone with all this. Friends have vanished (weren't real friend then) and my support is minimal. I never knew about pals, I'll definitely have a look and hopefully someone can help. I'm normally healthy, active and lively, but that's all vanished and more illnesses have presented on top. So getting the root sorted would be fantastic.

Thanks for your reply. Xx

livvi_livvi profile image
livvi_livvi in reply to

I totally relate to the friends (or rather people you thought were friends) disappearing. I have been really ill this year and am struggling with my endometriosis and the debilitating pain and have found that some of the people I thought were friends have disappeared. But you are not alone you have all the women on here who are brilliant. I am the same too I used to be really healthy and active and used to exercise all the time now I struggle to walk around my house.

I do think that the support of professionals does help though my gynaecologist is amazing! So do contact PALS!!! Xx

in reply tolivvi_livvi

I definitely will, I really hope it helps. I just want someone to acknowledge the pain and help, rather than Pam me off. Thank you for your help thou. I'm the same even getting round the house is a struggle at times too. Xx

livvi_livvi profile image
livvi_livvi in reply to

Yeh I totally understand. Keep fighting and stay strong!!! Xxx

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