I have symptoms but don't know for sure :/

Hi there - sorry in advance this is going to be all babble :(

I feel really silly posting in here, I've not been diagnosed with endometriosis I've not even been to the GP to suggest it as I've only really realised today that i fit almost every single symptom of endo.

I'm only 19 (nearly 20) my periods started when I was 10 and within a year they were extremely heavy (i would bleed for 9 days solid every day heavy) and painful but I put this down to normal period pains as obviously i had nothing to compare it to and everyone I spoke to, friends etc, told me it was normal. I was rarely able to use tampons as I found them to be very painful to insert and uncomfortable but I was told this was because I was still a virgin so it was an 'unknown sensation' to me.

I was diagnosed with IBS when I was 13 after a number of blood tests came back clear but had no further investigations to rule out anything else. I have awful fluctuations in my bowels very painful. None of the normal IBS drugs or medications have helped with me and I've never been able to identify a particular food that makes it worse.

I should probably tell you at this point that I have been on the DEPO contraceptive injection for about 4 years now which has stopped my periods completely but I still get twinges of pain that feel like period pain every now and again.

Since losing my virginity, which was extremely painful and took 3 attempts as I was in so much pain, I have experienced severe pain every time I have sex. I am very lucky that I have been with my current boyfriend for 2 years and he is very understanding and gentle with me. I can't even describe the pain its just awful and lasts for about 10minutes at the beginning of intercourse and even then doesn't really go away fully but then I'm almost always in pain afterwards. I have been fully screened for STDs and am completely clear so I know this isn't the cause.

I have pain in my lower back, hips and knees (which I know is often referred pain originating from the hips). I'm at university studying to become a nurse which makes it seem even stupider that I'm posting in here for help. Stress makes all my symptoms, including my IBS 10000x worse but I can't avoid that I've got a lot of shit going on at home and the stress of being away at university. The past few years I've felt tired all the time and increasingly low in mood. I feel that I'm letting my boyfriend down as I'm always reluctant to have sex as I'm scared of the pain and I don't feel like a 'normal' teenager.

Have any of you on here had similar experiences?

I'm probably being really stupid but it seems that I fit a lot of the symptoms and wanted to know if any of you could give me any advice on whether this sounds like endo or what I should do about it. I'm reluctant to go to the GP if all they'll do is say its my IBS and that i'm already on the depo which is used as hormonal treatment for endo. Just feeling so low and emotional about it all any help or advice is greatly appreciated :(

8 Replies

  • You sound the same as me! I struggled from an early age, went and asked to be tested for endo around 4 years ago but they just brushed me of, I had also been diagnosed with ibs, I had to wait until I had been trying for a baby for 2 years so that I could get a laparoscopy for the drs to then say I did have endo after all!!! If I was you I'd go to the drs, if he brushes you of ask to be refered to a specialist, if you don't have it atleast you will know x

  • Thanks for the reply.

    I'm just really worried that because I'm already on the Depo contraceptive injection they won't be able to do anything for me, so I don't know if there's any point in going :/ I'm probably just overthinking it all just feeling so rubbish :(

  • There are other forms of treatment though rather than just the hormones, you might need the adhesions removing if you have them, and in the end atleast you will know what's up, constantly wondering will cause you stress which won't help you xx

  • Hey.. i am a 27 year old female and had the same sort of symptons that you described. I thought it was a normal thing when I started to have the painful and heavy pains of a period and thought nothing of it. I dont get pain during sex at all but constant pain before, during and after my perod. In the last 2 years I have come to realise that this pain is not normal. I wnt to my GP 2 years ago and was jut put on strong medication for 6 moths... this did nothing. I was hen diagnosed with IBS and agin was on differnt medication and asked to change my diet like yourself to try and assess certain foods that triggered it for 6 months i tried this... this didnt work. They then asked me to try the mini pill to stabilise my hormones for 6 months and this didnt work. I then put my foot down and asked to see a specialist and they sent me to see a gynaecologist who got me a scan to see if there was anything else that could be causing the pain... it was until I was unable to stand up, literally crawling on the floor that the specialist said it could be endo.... i have my pre op appt booked for 28th of this month and boy am I glad. The one thing I can say is I would go to se your Gp and describe everything that you have said and if they try and push you away and say its IBS then tell them that you would like to see a specialist just to be sure because like you said apart from everything else your dealing with they may be something that maybe you could control and after all it is your health and you want a happy sex life one where you dont shudder at the thought of trying to enjoy sex where there is constant pain. Hope this helps xx

  • Thanks for the reply. Just feel so silly! I'm already on what they would call hormonal therapy even if im using it for contraception so don't know what more they could do for me :( I'm going to try and make an appointment with my GP I feel so awful that my boyfriend has to put up with me like this :( Thankyou for your advice and good luck with the op xx

  • If you do get diagnosed with endo, then they can excise it away, hopefully relieving some of the pain. Hoping so, as having major op in September. Hope you get the answer you need soon x

  • Hello, I finally got referred to a specialist in 2007 after many years of trying because I was persistent. I had been on the Depo injection for well over 3 years and had come off it due to having to have it more and more frequently because the pain came back and slight break through spotting. In the end the nurse suggested the mini pill instead which I agreed too eventually; praying that my periods would not return. They didn’t, I had no bleeding whatsoever but the pain came and it was constant. I went to see three different doctors at my practice until I found one that would help me and I got a referral without even having periods so please don’t take no for an answer, it’s your body and it’s your right to understand what’s going on with it.xx

  • Hi I agree with everyone else, If you have pain during and after sex this alone should warrant a Gynea appointment. Ask to be referred to a gynaecologist.

    To help with diagnosis you need to start keeping a pain diary now. This will back up all the symptoms your having and be easier for the gyny consultant to diagnose the problem. The reason I say this is that my first consultant was extremely sceptical about my condition, tried various hormone treatments and only after 4 months of prostap that did nothing, it was only after looking at my pain diary over that time did she decide that I was case for surgery. Keep the diary it will help!

    Good luck

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