Words of wisdom welcome

Hiya ladies, i guess I would just really appreciate anyone's thoughts on my situation. When i was much younger i used to get really bad periods, vomiting, time off school etc. I then went on the combi pill at 17, and things were a lot better. I am 32 now and came off the pill in Jan, to give mu body a break as keen to start a family in the next few years. Over the last 2.5 years i have had ongoing what i thought were UTIs. I didnt have a lot of the normal symptoms but always a sore back, eased with painkillers and hot water bottles, and feeling really tired and generally icky. When they dip tested the urine samples there was always stuff there, such as white blood cells or blood. But, when they sent off the samples they always came back clear. I have been on and off antibiotics throughout this time, including 6months on a low dose.

But, being off the pill my periods have gotten worse again, to the point of going to emergency doc at 5am this weekend as i felt like I couldn't pee, the pain/ pressure when was on the loo was so severe i thought i was going to pass out and ended up having a panic attack. I have ibs related constipation and this has always been worse at period time but it felt like proper contractions and pressure in my whole pelvis.

The emergency doc gave me coedine which i had to take every 4 hours to ease the back pain, and my period eventually came the next morning.

The emergency doc thinks it has not been UTIs at all, and my own doc has agreeed to refer me to gynaecologist today. Sooooo i guess i am wondering if all this sounds familiar to any of you guys?!

16 Replies

  • Forgot to mention, sex is painful in certain positions and i also get leg pains - top of thigh usually- with period and there are a lot of clots when i manage to pee too , sorry its so long! X

  • Hi, This sounds similar to what I went through in my 30's. I felt nauseated all the time. Kept feeling like I had UTI, but labs came back clear. Low back pain. Very painful periods. Iwas finally diagnosed with Endometriosis by my gynecologist.

  • Thank u for the response! Did u have to get a laparoscopy? X

  • I did get a lap and had lots of adhesions and endo removed at that time.

  • Hi this definitely sounds like endo. It sounds like it's effecting both bladder and bowel. Most women are diagnosed with Ibs, as I was, but when things get worse at period time it is more likely to be endo related.

    If this is the case then you need to have a diagnostic lap to find out.

    If you bowel and bladder are involved then please make sure a general gynaecologist doesn't touch it. You must then be referred to a specialist at a BSGE centre.

    If there is anything else I can help with please don't hesitate to contact me.

  • Thank you so much for the reply! I really appreciate your kindness, it sometimes feels like i am some kind of loony, cant believe they have been giving me antibiotics for so long for no reason. Guess i will have to wait on the gynaecologist appointment to find out more- will they be able to tell if its endo without a Lap? Thought kind pf petrifies me lol. Cant face a repeat of the last few days again though, am starting back on the pill to hopefully ease the symptoms meanwhile x

  • Whilst endometriomas and severe disease may show up on scans unfortunately the only real way to diagnose is with a lap. It's actually not as bad as you think. They make up to 4 tiny incisions in the abdomen. One of these is generally in the belly button where they put a camera in so they can see what is going on. The worst part is they pump gas in. Which can cause a lot of pain and discomfort in shoulder tips. Peppermint tea or oil really helps relieve this. Also walking around helps the gas to disperse quicker.

    There is a Facebook page called endo revisited, which Linda on here has set up,if you would like to join, where women like us can get support and advice. On there we can openly discuss consultants unlike on here. I'm and admin so would be happy to accept your request. It only went live about 4 weeks ago and we have nearly 400 members already, most of which are from here.

    Take care.

    Here if you need anything.

  • Thanks again so much thats really appreciated xxx

  • @lolly101

    You are not looney .

    Your dr is .

    We don't imagine pain . It's real and needs addressing

  • @lolly101

    It does sound as if the endo is raising its ugly head again .

    I'm not sure if you meant you wanted a baby now or not Z

    My daughter had very good luck with the Mirena inserted

    The first few months were not great but after that she felt way better .

    If it's endo narcotic pain pills are not the best solution .

    You will be using them long term and you'll get addicted .

    Ask him again and don't leave out details tell him you want a long term plan and that narcotics are only good for just after surgery short term

  • Thank you, really appreciate the reply. Just got referred to a gynaecologist yeaterday but have spent time today writing out my symptoms etc so at least I will be prepared when i get an appointment through! X

  • hi

    this sound just like me!! Well with the UTIs I am currently going back and forward to the doctors as I have symptoms of a uti and they don't no what it is. Unlike you mine is clear when dip tested and sometimes when it has gone to lab has come back infected but antibiotics don't work. Its a nightmare when you have to rely on your pill especially when your wanting to start a family. I am on the pill and still get chronic period pain have you been told if you have endometriosis? I haven't hope you get some answered soon.

  • Hey 😊 Sorry to hear you have been having these uti type issues too, after things came to a head this weekend the doctor has agreed it's unlikely to be uti related at all. The referral has now been made to gynaecologist so have had a good read through all the info on here and the FB page so i am prepared for the initial consultation.

    Are they going to refer younto a gynaecologist too? I wish i hadnt wasted 2.5 years treating something that hasnt even been the problem lol.

    I have IBS and skin issues too, so am wondering if these are related too!


  • I went to the doctors yesterday and they have hopefully referred me to gynaecologist, I have ibs too and pocs so could all be linked I've been going through this for 3years.

  • Wow we have a lot in common laura! Im also a laura.... leta hope we both get an upturn in fortunes! X

  • we do haha hope we do. Good luck.

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