I need help

[NoQualityofLife]

I started my period in 2012, age 13, and from then on have been in horrific pain. They have always been painful and heavy, I would bleed through a pad in 30 minutes so would wear 5 at a time during school so I could stay in class. At 15 I was put on the pill but while that stopped the pain outside my period, it didn't during as that was the same. At 16 I had the pill changed due to being diagnosed with migraines but that caused me to bleed for 9 months with no break.

As the years went on, the pain got worse, I would be bedbound during my period, vomiting and diahorrea each cycle, around a week before my period started I would get ill, and I would only have 2 days a months where I wasn't in pain. The beginning of 2019, I got the injection because I was sick of taking so many tablets all the time and still feeling awful, and the doctors weren't doing anything to help me other than accusing me of being a drug addict and/or a hypercondriac.

This caused a reaction and made what was already happening worse. I had to quit my job, defer university for a year, and was back and forwards to my GP, on the phone with 111 multiple times a week, and went to the A&E department twice, all in three weeks. At this point, I was 19 years old and the pain was so sever my GP put me on 120mg of dihydrocodeine while telling me it's a strong dose for someone my age and I shouldn't need it. I was literally tearing my hair out because of the pain and I could feel it over my whole body. I later found out it's because I had a retroverted uterus so it must have been pressing on a nerve in my spine.

I had to lie about not being a virgin so I could have an internal ultrasound done because they couldn't see anything on an external due to my uterus being tilted so far back. That came back clear so they sent me to the hospital where I was told that due to my weight they cannot do exploratory surgery to diagnose me, even though they are 99.9% sure I have endometriosis. I had a coil fitted, was in agony the whole time, I can't even stand the feeling of a speculum. I'm being forced to sit here in pain, watching my life go passed me. I can't sit up for more than 30 minutes at a time without debilitating pain, I'm unable to walk more than 2 minutes, stand more than 5 without being in agony. I live my life laying on my back with a tens machine or a hot water bottle on my belly. I'm 21 and have no quality of life.

Can anyone offer me any tips, or support. I am literally at the end of my tether right now and don't know how much longer I can cope like this.

[Hidden]

I'm very sad to read your story. Your GP is appalling. No one should deny that someone else is in pain.

I'd do two things. First of all, try to find out which GP in your practice is most clued up on endometriosis. It's a very serious illness and many doctors are unaware of this. Then go and see that GP and ask to be referred to someone who specialises in endometriosis or who has a special interest in endometriosis. There are now Endometriosis Centres of Excellence around the country, maybe you are near one.

It took me years and years to get to that point unfortunately. You need to fight for all the help you get with this illness, that's been my experience. You get treated with scepticism and contempt by some doctors.

Even when you get the best help available, there isn't always an end to it, you have bad spells and better spells. I've had numerous operations and drug treatments. Painkillers don't even work that well, even very strong ones because this pain is horrendous.

Good luck!

[NoQualityofLife in reply to Hidden]

Thank you so much! I just looked it up and I live fairly close to 3 centres so will call up my GP tomorrow. I struggle with extreme anxiety and agoraphobia, only leaving the house when I absolutely have to but I just said to my mum that I would travel to Scotland if I have to and I live down south. I never even knew these centres of excellence existed so thank you. You've given me hope.

I had my referral to the pain management clinic at my local hospital rejected last week due to Covid, I haven't even been put on a waiting list. I just feel so demoralised all the time because it feels like no one believes me, finding this forum and getting this support, reading these stories, it's really helping. My mum is an angel and does so much for me, I know she would take it all away from me if she could and she helps me fight to get heard at the doctors, but she doesn't fully understand the pain and everything that it entails because she hasn't ever experienced it first hand, she's only had bad periods and seen me go through this. Thank you for giving me hope that something else can be done, thank you.

[Ursa80 in reply to NoQualityofLife]

Hello,

I was so sorry to read your post, there is also a centre in Oxford and a centre at the Royal Free in London. I refused to go on contraceptive or any other pill for a long time as I had but I didn't know another health condition and tried to manage it for a with diet and exercise. This really isn't for everyone. Looking at your health in the round I have found is a good idea, that was what the diet was meant to do and when I say diet I mean eating differently permanently, not just a few weeks. I stopped eating and drinking things I knew aggravated my stomach for example foods that had been through a lot of processes- gluten, sugars, alcohol. This helped manage, I did not realise at the time my liver function and this really helped my symptoms a lot. I realised the symptoms I was experiencing are the end result of of other issues and the cause lies elsewhere- I am still trying to find the cause, I think at root there is a hormone imbalance in my case and it could be dietary. I wish endometriosis treatment was treated with as much care as diabetes. Hormones have such massive effects over time with such tiny amounts of chemical.

While you are waiting for help and researching do consider keeping a symptom diary and a diary of the foods you eat. I did this and that is how I worked out what I should cut out from my diet. I also made a note of how many painkillers I took on those days. It will also help you when you do eventually have an appointment Consultants may ask you in a week, how many days do you take painkillers for example, if you say everyday, but then refer to your diary you may find you take painkillers every day except for 4 days in a month it might help you and them see what was different about that 4 days in a month and where you might have been in your cycle. Any more precise information is useful all round. I keep my diary in my phone notes that way I always have it with me. I have epilepsy and migraine and I found from keeping notes that if I have a certain type of headache a period is likely in the next 7-10 days.

I hope that helps!

L

[NoQualityofLife in reply to Ursa80]

Thank you so much! I dont know why I've never thought of that before, I mean I used to keep a diary of when I had a period and how heavy/ painful it was but I stopped around age 17 because the GP wasn't interested. This is so helpful, I will get started on this immediately.

I called my GP this morning and made a telephone appointment to talk to the gynaecology specialist there tomorrow so all of this will help to hopefully get me help.

You're both so great, thank you. I don't have the words to express my gratitude, just thank you.

I hope you're safe x

[Hidden in reply to NoQualityofLife]

Good luck! Be strong and I hope you find someone that really listens and helps. If you aren't happy with a GP or a hospital doctor or consultant, you have the right to another opinion. I was fobbed off for years. No one was interested at all.

Part of the trouble is the basic training of doctors is often poor with regards to endometriosis. It is a whole body disease. When I saw a decent specialist, it was one of the first things he said to me. Just keep fighting if you have to until you find the right team that will work with you to find the best way forward.

By the way, I actually found pain specialists a waste of time after a long wait to see one. (others may have had a better experience). Working with my sympathetic GP who knows me well has been a lot more helpful.

Re diet, I discovered something called the Low Fodmap diet which my consultant said had helped a lot of people as I've been plagued by severe bowel endometriosis. It may not help everyone but definitely helps me. Perhaps that is something to look into in the future if you have severe digestive issues relating to bowel endo which you don't really know as yet Beware of all sorts of rubbish on the internet by unqualified people telling you to cut out all sorts of things, often all the things that you enjoy! Life with endometriosis is hard enough!

I wish you good luck!

[writingllama19078]

Jesus, I'm on 60mg of dihydrocodeine 4 times a day and I'm 22. I would press them to find out what's going on, they're lying when they say they can't help you because they can. Keep pushing for help, you'll eventually get it and hopefully it will give your some answers and put your mind at rest