I began having pelvic pains in 2016 following having a coil fitted. Immediately I was in hospital having severe cramping. They thought the coil had migrated. It was found in the right place and I was sent home. Every month was the same around my cycle. One evening I came home from work with severe pelvic pain on my right side. I called 111 and was told to take paracetamol and go to bed, only to call a paramedic at midnight as I could not take the pain and had a fever. I was admitted to hospital where they detected an ovarian cyst of 5.6cm…to small to operate. I had a follow up scan on my birthday in December 2017 and there was so much bloating that the ovary could not be seen.
My symptoms come and go but more often than not I have severe pain around my cycle. Since October last year I have had new symptoms including severe bloating with gas, pain on both my right and left pelvic area, fatigue, pain in the tops of my legs and restless legs, feeling full easily and like food is stuck in my throat. My mood is low at times. I have returned to the GP and was given Omeprazole 20mg as I also had pain in my stomach, and gas. I’ve had gas for a while and it’s more of a slow release through the mouth than actual burping (hard to describe). The GP also sent me for bloods including celiac, thyroid, kidney and liver function, crohns and ovarian cancer. All came back normal. I’ve also had a further internal scan around my pelvis which was normal. The tablets have helped my upper gastro issue, but I’m still having frequent pelvic pain so much that I have been doubled over and it has lasted more than 24 hours, leaving me exhausted. The last three times have been on my period or after intercourse. I’m having all the gastro symptoms at the same time.
I am aware that my body is likely to be changing as I’m now 41 years old. I have contacted the GP to tell them that I have been researching around peri menopause and also endometriosis…more so bowel endometriosis. I have had some bloods recently to check my hormones and am awaiting those results currently.
I have read that it can take around 7 years for a diagnosis for endometriosis, and I am worried that the GP is going to put it down to IBS as it can often be misdiagnosed for this.
I just want some guidance and support for next steps.
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bex_h_c
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The fact that your symptoms flare around your cycle is a good indication that it is not IBS (in my opinion). IBS would be there regardless of your period, so that can easily be ruled out. You sound much like me, I've had so many tests i can't even list them all lol. All my results were always normal! Had my lap last month and they found endo after years of being told it was in my head. Go to the GP armed with lots of information about endo, explain that you would like a referral to a gynae so you can explore the endometriosis possibility. You deserve answers, being checked over by a proper gynae is your right as a patient. Xxx
Sadly I've not spoken to one single person who hasn't been fobbed off, ignored, gaslight, and just flat out called crazy. It seems that with endometriosis (and other similar gynaecological conditions) we are often ignored because doctors know so little about it. It's made me very conscious of telling as many people as possible about endometriosis, and making sure there's more understanding about it being more than just a period problem.
If you can print out the symptom list for endometriosis and take that with you, so you can show the GP how many of your symptoms match. Try get a female GP if at all possible, I've always had better luck with women.
Yes I am going to make sure that I am armed with as much as I can before I go.
I have been using ibuprofen but on Sunday when my symptoms were at their worst, it did not touch them. I had a hot water bottle, some effervescence and two hot baths….none of which worked. I was seriously considering going to A&E!
Thank you so much for your support, it makes so much difference sharing this and knowing there are others out there who share similar experiences xx
Sometimes it can just be about making the symptoms reduce as much as possible, but when it is so severe that can be a challenge! Definitely speak to the GP and get some decent painkillers sorted, just ibuprofen is unlikely to even touch it. As much as it sucks being on painkillers that may make you woosy or constipated, it is much worse (in my opinion) to be in so much pain you can't function. Explain that it isn't touching the pain and see what they suggest
I can definitely recommend trying CBD oil, some people really respond well to it. It is a natural anti-inflammatory start low and increase until you find the right balance.
If the hot water bottle helps then i definitely recommend getting yourself a rechargeable one to save on filling the kettle, and a plug in heated pad i couldn't live without mine! There's also patches called BeYou which you place on your back and belly, they can be soothing. TENS machines are a really good distraction from the worst of the pain, the pain will still be there but the sensation of the electric shocks pulls your focus from it. Don't spend a fortune on one! I got a cheap £15 one and it was great as a way of testing how effective it was for me. Once i knew it helped i spent about £30 getting a better one with more settings and more electrodes. Try every setting and play with the intensity, place it in different areas and see what works best. Most of it is trial and error! Just don't touch it when it is turned on lol i got a right shock when i did 🤣 Other than that i highly recommend doing daily yoga, there's fab free videos on YouTube if you put in "yoga for endometriosis ". Really helps to ease back and pelvic pain! Pelvic floor exercises are good too
I'm glad i could help love! If you ever need a chat just post or even drop me a message, i go missing on weekends haha but I check on here through the week. Happy to chat and try advise where i can! Xxx
Morning! So I had another consultation yesterday with a female GP. My bloods for my hormone test came back normal. She said she is going to start me on a course of progesterone, to see if it helps ease the symptoms. Then I’m booked in for an MRI in around 6 weeks. She spoke about a referral to a gynaecologist, but said I could wait for 2 YEARS!!!!! I cannot believe the waiting list is that long, no wonder people are falling through the net with diagnosis. It’s so scary.
I guess this is the start of the proper investigation for me. I’m glad she listened and it helped that she is the same age, she seemed to get it and agreed that my symptoms are describable for endometriosis. So let’s see how it goes!! Here goes the journey to diagnosis and treatment xx
I'm so pleased you finally got listened to! Yes it can be a very long road, and if you get a crappy gynae the first time round (like I did) then that wait gets extended further sadly. Just keep pushing for answers, it will be worth the wait in the end. If you can try see her every time you need to speak about the endo, that way you know you'll be taken seriously every time. You might be able to get your referral marked as "urgent" if the MRI shows anything severe endo wise, or if your symptoms are severe and the pill isn't helping. Just note that the pill can mask symptoms, not cure them sadly. And your MRI (and any other scan) could come back clear but you could still have endo. It likes hiding lol, elusive little monster. Deep endo shows up on MRI, and for ultrasound too but only with the right knowledge and specific type of scan. You may find you are jumping through the doctor's hoops a bit for a while, just stay strong and keep a diary of everything xxx
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