Need the best help

[kay34]

Hi all, just looking for advice please. I'm just starting the journey of being diagnosed with endometriosis after being rush to hospital with severe bleeding and everything else that goes with it. The lovely A&E doctor said I have got endometriosis but the gynecologist couldn't be both to come see me and advise to go on Norethisterone tablet to stop the bleeding. That was on the 19 of Feb. Since then I've seen a gynecology nurse who after looking inside said I need the top of my cervix burning due to being red and inflammation. So with the pain of that and now my body wanting to have a period again. My belly is hard and so painful that am either full of pain killers or walking round with a hot water bottle on me. If I speak to my doctor the just say ever 'pad up or stop taking the tablets' and yes that are the words they used.

So would be very grateful if anyone could shine a light on what I do next please

[Chillier]

Hi Kay, I have had similar problem with doctors. I had agonising pain before I was diagnosed in which I couldn't move or do anything. I was just told it was chronic pain and to take the tablets. After 7 months we went private and now Ive had a laproscopy and on medical treatment and feeling so much better. I felt so much more listened too and they actually seemed to care. Really put your foot down with the doctors or get someone close to help you. You don't want it to get so unbearable. I ended up in a mental health hospital before being listened too. Just keep pushing them and pushing them. Ring the GP for anything and tell them how bad it is. I really hope you get sorted. Best wishes x

[kay34 in reply to Chillier]

Thank you Chillier, am going to the doctor tomorrow and stay till the Liston to me as I can't ever sit in a car with my wife now with out having to take tablets or crying with the pain x

[Chillier in reply to kay34]

It's so bad. You are not alone. It's such a horrible disease but you can do this. My husband has been incredible support and I'm sure your wife is too. Just take regular pain killers don't wait for the pain to come. I really hope the doctors listen to you. Good luck xx

[Adventure101]

Hi sorry to hear your in this situation. i was in a similar situation i had suspected endo and got really bad i passed out and went to A&E they just said take painkillers didnt do a scan or anything about 3 months later i got rushed to hospital by GP due to blood tests being irregular and my stomach was so swollen and hard, i ended up having emergency surgery to remove 15cm and 10cm cysts on my ovaries as well as endo on my stomach wall and uterus. Im not trying to worry you just keep pushing the docs i didnt push enough and ended up really poorly with it because the docs made me feel like i was over exaggerating and it was all in my head

[kay34 in reply to Adventure101]

Thank you Adventure 101. You not said anything that have not already gone past me mind now. Yes my belly is hard and sore to touch now, I can't walk around a supermarket with out pain of the trolley going in to the belly x

[Adventure101 in reply to kay34]

I was like that could t stand anything heavier then a T-shirt over it in the end, have you had an ultrasound at all to check for cysts?

[kay34 in reply to Adventure101]

I had a ultrasound in November and they said it was all clear but that was before being taken to hospital last month. My belly is that hard and swollen today I look pregnant (am 100 % not). With what you guys have come back with today I'm going to speak to my doctor tomorrow and demand ask and not just 'take the tablet or pad up'.

[Torie79 in reply to kay34]

Hi Kay34. My daughter was 14 when she was diagnosed with Endo via a laparoscopy, 2 years prior to this she went through every combined pill going, had a scan and was told she was suffering from IBS and that her heavy periods was because she had just started her period at 12 and that her body had still to adjust to the change. She was made to feel like no one believed her! Especially because she was only 14! We were fighting everything to try and get her believed that something was wrong! For those 2 years I as a mother had to see my daughter bent over holding onto door frames,crying, screaming with the pain and struggling to get out of bed, every time I took her to the doctor she was told to take paracetamol and ibroproven for the pain which didn’t even touch the sides! We were seeing the doc every two weeks at one point ! We had to fight for her to get referred to see the endo consultant because she was only 14 the doc said she couldn’t possibly have it as the age range is mid twenties upwards. It took a good few weeks for the referral and six months before she could have her op. She was nurvous as she like you wanted something to be there to prove that she wasn’t going crazy and it wasn’t all in her head! Luckily they did find one behind her uterus, a size of a 5pence is what the surgeon said. Amazing how something so small can cause so much disruption! but once she had the op she was a different child, happy,less moody, and could live like a 14yr old again. For the past 18 months however she has been having the symptoms once again and now 4 years down the line from originally being diagnosed and now 18 she has had to undergo yet another operation this time they found 3 each the size of a 1 pound coin. Two behind both overies and one by her uterus again, she is now on recovery for an estimated 14 days. The journey is not a nice one for all concerned and you feel that you are constantly fighting weather that be the condition or the doctors! But never give up! And question everything! You know your body better than anyone! If I didn’t fight for my daughter at 14 to have the operation god knows what place she would of been in! Yes she struggles with this horrible illness every day,she has good days and bad days and she still carries on, she goes to uni, goes to work. I am very proud of her! Her determination to not let this illness rule her life is amazing! You will learn to deal with the symptoms and sometimes it may feel like there is no hope! but stick with it! She is now raising awareness for Endo and that it does not have an age range it can happen from the time you get your period her childhood was stolen from her by this illness, she is determined that it won’t steel her life! She is now looking at having her eggs frozen “just in case” she has to have a hysterectomy! thinking like that at 18 is a scary thing and is scary for me to hear as her mother but it’s a possibility! The illness is relentless and you need to be the same! If you want to talk to her let me know, she will be happy to share her experience. Hope this has helped

[Hidden]

Hi there!

Ive just had my second operation for Endometriosis and I’ve recently been to A&E for a similar reason, I couldn’t stop bleeding at all! However, although my age they examined me through the steps of a smear test to check for any ulcers or further damage etc. unfortunately this didn’t go to plan in my view and the doctor was not taking my case seriously! however coming up to the end of the night I was recommended Tranexamic Acid (tablets) perhaps this could help for you too?