Endometriosis UK

Is it all in my head?

Hi ladies,

Probably a bit tmi but here goes, does anybody get let a full feeling down below when they are on their period, like an ache as if someone is pulling down on it 🤦🏻‍♀️ I’ve not been diagnosed yet am due my lap on the 22nd March, the only time I’m in pain is when I’m on my period or ovulating the rest of the month is just discomfort that I can live with. I’m

Panicking they aren’t going to find anything and it’s all in my head! X

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Sounds exactly like my symptons, any pain around hips, pelvis yet? Endo was exactly where the pain was and now its mostly gone I already feel less pain, don't doubt yourself, pain is not normal your body is telling you something is wrong! I really thought my body was playing a trick on me, I was losing my mind ... your not! also pill really helped and post op too, no waiting for period I can have 3 months break.

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Thank you endopositive, pain is all in my pelvis my hips all the way round to my lower back, plus my thighs ache too, although this is me describing a bad day like when I’m on my period, the rest of the month is just discomfort, and painful sex, have you had a lap? I had a scan before Xmas and my gp said all was fine except my left ovary had lots of follicles so I’m wondering if this is connected? I’ve tried multiple contraception but I’m sure I have a hormonal imbalance as anything with hormones turns me into a raging emotional wreck :-( x

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Ooh yes my pain same place, small cyst on ovary, but they found all the endo in pelvis bladder rectum, not uterus, tubes etc. I had shooting pains down leg out of period and started vomiting from pain, plus severe pain only lasts 25 mins, so not long enough for pain killer to work. Had lap last week, life saver x but still need to sort out future treatment of this auto-immune disease.

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I have an electric blanket on my bed and that helps loads with the back pain! This is probably tmi but sex obviously hurts as does an internal examination but occasionally after sex I’m on my so much pain in my pelvis I also get like a sharp shooting pain in my rectum too it’s awful and I’m like it for about an hour then after I just feel tender. When I’m ovulating or on my period the pain lasts for a day maybe 2 days but that’s it it kind of comes and goes x

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Hi Mrsgorle endo can effect everyone differently for me (after sex) my whole uterus would contract and it very much feels like period pain and bloats me massively to the point I look about 5 months pregnant and some occasions would cause an explosive back end too! I also get the back pain and the ovulating pain too - as if the egg is waaay too big to fit through the tiny hole type of feeling and my pain probably lasts initially 4 days around when my period starts but a lot of the time I can bleed for 2 weeks and the pain does come back during this. I can’t say all of this is endo as I also have adenomyosis but I was told by a consultant that it was all in my head and sent me for a psych evaluation that was 4 years ago and I only got diagnosed last year after 9 years of asking - my advice is if you think there is something wrong there probably is so keep fighting until they find it!

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I feel it all the time. Feels like my uterus is constantly being pulled down. Extremely uncomfortable then you have to deal with the other symptoms like chronic pelvic pain and inflammation. It’s horrible. It’s not in your head but you can practice healthy ways to clear the mind like Yoga and meditation x

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Hi there, don’t doubt yourself only you know your body. I had the heaviness you have described. I have stage 4 Rectovaginal endo and have suffered chronic intense pain in my back, pelvis, groin and leg for a long time. I didn’t associate this with my endo at first as I had only been diagnosed with stage 4 endo at that point not rectovaginal.

I also suffered from episodes of dizziness, nausea, fatigue and weakness. At one point I was out running and had blurred vision and extreme fatigue and my husband to come and collect me in the car. I thought this was in my head, my bloods were normal I thought I might have been anaemic. It wasn’t until I researched and looked on forums that this was all related to endo. I just thought I needed to get on with things. I’m a nurse and I should know better to listen to your body. Sometimes we are all guilty of refusing to acknowledge and accept we can’t slow down and the need to prove to ourselves that this disease won’t beat us.

I had a laparoscopy dec 2016, I had been feeling worse from the beginning of that year chronic fatigue and pain was worse, swollen abdo. I had 2 large endometriomas drained they were unable to remove. This is why my abdomen was so swollen and heavy! They also discovered the recto vaginal endo and nodule and adhesions to my bowel which is the source of my pain.

I was supposed to have a total hysterectomy in dec 2017 they only managed to remove my ovaries and Fallopian tubes. My ovaries and ureters were buried in an endometrial mass and a 2 hour op took 5 hours. I am now awaiting another 5 hour op which requires a colorectal surgeon as well.

I’ve had recurrent water infections for 2 years which was due to adhesions on my ureters. Had no idea this was linked.

So to everyone who reads this don’t doubt yourselves and don’t be afraid to push things with GPS, Consultants etc. I’m lucky that I have a gynae team who are leading the way with the latest research and clinics for endo in Wales. Don’t accept anything but the best I switched Consultants and he took my referral from out of area.

Sorry the long post 😳

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Have you had an ultrasound or anything? This is exactly how I felt with my big fibroid, and it went once I had that taken out.

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Just read your replies, I see you've had that checked out. Hope you find an answer!

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