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Endometriosis UK
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Need advice please

Hi I’m new so I’m not sure what if this is the right place to post. It anyways I’m 23 with two girls and I have suspected endometriosis but I feel like I have something a lot worse so I need advice I have asked doctors but I wanted advice from woman who understand anyways my symptoms are constantly tired, pain in my pelvis constantly sometimes it’s painful sometimes irritating my periods are now all over and I bleed after sex not always but when I do it’s normally lasting a few days so not sure if it’s bring my period on I do get pain during sex too it hurts when I pee again sometimes a bit painful other times irritating I’ve had swabs and a colposcopy and it showed cin 1 but they removed that and I had a smear 6 months later to show all clear that was last may 2018 I’m waiting to go see the gynaecologist the end of January to get this looked into further but I’m just wondering is this sounding like endometriosis or something else because what I’ve been told people with the condition are in agony and bed bound for days but I’m not it can get painful but not bed bound thankyou all

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Hi. Endo can affect everyone differently and your symptoms are definitely consistent with endometriosis. It sounds like you and your doctors are looking into things to make sure you don’t have other problems. Have they spoken to you about getting a laparoscopy to confirm you had Endo? This would be a good thing to reassure you on the diagnosis and then start treatment to make you more comfortable. Once you have a diagnosis you should try to get referred to a specialist Endo Centre. Good luck with everything.

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I was supposed to get a laparoscopy last April but chickened out but I’m more than sure they will put me back on the list again when I see them at the end of the month I’m just sick of this irritating pain it’s not on either side it’s directly in the middle of I get up too quickly or sit to quick it’s like a sharp intense pain for a second but I have constant pain not enough to take tablets to ease but it’s always there Even if I cough or sneeze it’s that intense sharp pain but thankyou anyways for replying I really appreciate it

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You don’t have to be bed bound for endo. I have quite a lot of the symptoms that you have and I was diagnosed with endo in September 17. My pain is still quite bad but only a few times has left me bed bound. I just get on with the pain and try and carry on my life x

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It’s just everything I’ve researched it sounded like woman were in horrendous pain and it’s not like that for me just always there niggling away or if it’s a bad day just more like period cramps but thankyou for replying x

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That’s like me. I was diagnosed with only mild endo but my pain is constant. Everyone’s pain thresholds are different some women have stage 4 endo the worst but get no pain at all some women have stage 1 endo and get the worst possible pain. Everyone is different x

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The NICE guideline requires that you are only referred to a gynaecologist with expertise in diagnosing and treating endo so they must have done additional training to carry out a diagnostic lap effectively and to treat the early stages of endo. So check that out. You will only get referral on to a specialist centre if there is evidence of severe disease so it is vitally important that the first specialist you see in gynaecology knows all the signs that might warrant referral straight away and otherwise knows what to look for at the lap.

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I will ask them when I get to see them fingers crossed I get a diagnosis Thankyou for replying

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My endo specialist said to me that the extent and staging number they give it are not linked to the level of pain/symptoms you get. He said its to do with where it is growing or what its pressing on that can increase the pain. The staging is to reflect the extent to which it effects your fertility. This was a relief to hear. I live in Ireland and couldn't get a hospital to take me seriously. I was admitted in the summer with suspected appendicitis. The brief 5 min review I had from a gynecology doctor included the phrase 'I don't think you'd have this much pain if it was endometriosis. It must be your appendix'. It wasn't...I paid to see an endometriosis specialist privately in England who found an area of deep infiltrating endometriosis. I was in varying degrees of pain pretty much everyday. I was very fatigued. I had many of your symptoms. Despite that I was still pushing through a busy routine of work.

A specialist will understand all the variations in symptoms and be able to advise you. Hope you get a diagnosis soon!

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Thankyou for the comment that’s eased my mind a bit just I always think it’s something very sinister I know endometriosis isn’t a good thing to have but if I did get diagnosed then at least I’ll finally be able to move forward x

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