Endometriosis UK
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Feel like giving up but it's only getting worse

Hi everyone, apologies in advance as this will be an essay but I need to get this off my chest to people that will, hopefully, understand.

I started my period back when I was 13. It all seemed pretty normal for the first few years and from the age of 15 I started taking the pill. When I turned 18 my periods just seemed to be getting worse and my mood wasn't great, so I went back to the doctors and a nurse saw me and said that "my body had got used to the pill, so we should try something else" and gave me the implant. WORST DECISION EVER! I went from a size 10/12 to a size 16 within 3 months and didn't have a period the whole time. After 6 months I had it out and I've not been able to lose the weight since. In fact I have just gone up in size over the years. Gradually but still.

My periods have always been irregular. I don't miss any months but even with an app to help me track my trends, I am always around a week off what the app has said.

In December I completely missed a period which is unlike me. In terms of how my periods are, they are dark red/brown, and heavy the first day. The pain I get is so intense. It usually results in being curled over, sweating, feeling hot and cold, crying, and in the past few years this has just become more and more intense.

I'm quite lucky that the last few times I have come on, I have been at home so it hasn't effected my work, however I have left work before due to my periods. If I am at work I find it incredibly hard to concentrate, my vision blurs, it's so difficult to stand up straight. Best way to describe it is like pulling on one of those elastic things you put over your foot and pull up with your arms at the gym. It's like there is an elastic band in my lower abdomen and I'm fighting it to stand up.

I get pains during ovulation. They don't last long. On and off for a few minutes over a couple days but I notice it. I am tired a lot. My mood changes can cause issues in my relationship as I can go from being so lovable to snappy. I hate when I'm in a bad mood. It's not the person I want to be.

I first went to the doctors when I was 17 (2008) and said about the pain / mood changes. I was told it was PMS and that the pains were normal. Since then I have god knows how many swabs, doctors/nurses look, and even went to the gynaecologist. This resulted in him saying that he thought it was more likely to be a bowel issue, as I get blood sometimes from my rectum, along with heavy bloating and feeling sick. Baring in mind that my mother has endometriosis, and so does her mother and her auntie couldn't conceive because of it, so it is common in my family. I then went to see a doctor about a wheat free diet - which didn't change any of my symptoms what so ever. Also had a flexible sigmoidoscopy which came back clear (in fact I was complimented during the procedure which was very odd!).

I was told by the gynecologist when I was about 20 that I should just stay on the pill and they would check further if there was anything wrong when it came to conceiving.

Now I'm just about to turn 26, and I just feel like if I have had endometriosis all of this time, and it has been causing scaring that can effect my fertility, I would be gutted. Especially if I had gone to the doctors at the age of 18.

It seemed as though they were saying "you're 18 so you probably just have painful periods" rather than taking me seriously. I know my own body.

So I haven't been back to the doctors since my last trip to see them about tablets for my bowel. These tablets hardly help at all and this whole journey has been an emotional rollercoaster and I just want an answer now.

I am currently signing up to a new doctors as I have moved into my first home and I am hoping they can help me but I keep putting it off. I know it is because it has taken so long to get no where and I just don't know if anyone is listening to me. Also I feel like I am taking up Doctors time with something that isn't urgent. I definitely felt like that at my old Doctors anyway.

I'm not entirely sure what I want to get out of this post to be honest, but it feels quite good just to get it off my chest.

Thanks :)

4 Replies

I don't have much advice, but I wanted you to know that you are not alone. My periods were horrendous right from the first one at 13. My parents ignored the fact that I was regularly missing school so I coped on my own until the school intervened when I was 15 and my mother took me to the GP who gave me mefenamic acid and told me I was just unlucky. I was fortunate to be able to have children in my 20's without a problem (and I am so, so relieved now that I was in a position to do so). I was finally diagnosed with endo last year at the age of 38 and have just had a hysterectomy because it was so bad. I can't think about all the doctors who told me pain was normal because I'm not ready to handle the emotional fallout of knowing I was left untreated for 25 years.

I'm sure you already know this but please go back and see someone at the new surgery - there's a really great chart of symptoms on the endo uk website which you can print out and take with you. If they say it's not or refuse to refer you on, please tell them to write on your notes that you've asked and exactly why they think you don't need a referral, and then tell the receptionist you need to see someone else and why. It's not normal to be in that much pain, no matter what they say. x.


Sorry that you had to suffer for so long Joreilly.

My mum had a hysterectomy too because of problems and thats when they found out that she had lots of it too.

I am going to make an effort to go to the doctors. Just doesn't feel like you can get this much off your chest at the doctors. I have checked my symptoms on the endo UK website and printed off the paperwork already to take it in. I suppose it's just having the courage to say to myself 'No something is definitely wrong and it needs to be sorted out'.

Thank you for sharing your story with me :) It gives me more determination to sort mine out.


Unfortunately, I do not have much advise.

This post is very close to my own story. I am now 21, and was diagnosed in September just days after my birthday. This was after three referrals to gynaecology and many doctors telling it's just period pain.

You know your own body.

All I can say is keep at them, and maybe keep a diary of every single symptom and period - I'm still yet to begin this as even after diagnosis I'm being treated like before.. if not worse.

I hope you get your diagnosis, before it's too late x


I feel u dear. Be strong this journey is a tough one but keep bothering doctors until u get relief . I'm 46 and live in chronic pain 24-7 new findings of cyst etc and get the run around but all we have is our health we need to demand solutions and not be ignored or presume it's in our heads. I have limitations to all the things I enjoyed walks dancing now bed bound usually no drive but I'm seeking surgery and will not give up


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