Hi everyone,I've been waiting for a long time to see a gynaecologist and finally have an appointment next week. My main symptoms are; digestive issues (often constipation), abdominal pain, low mood, very bad period pains for around 3 days at the start of my period, back pain (which has started to radiate to my legs) fatigue, brain fog and sore boobs. All the abdominal and digestive issues are much worse around my period. I feel like I haven't been listened to at all by doctors in the past, which is so frustrating and I'm sure something lots of you can sympathise with. I've been prescribed tablets for period pains, but they made my digestive symptoms worse and didn't actually make much of a difference to the pain I experience. Because of the amount of different doctors I have seen, I have started to downplay my symptoms as normal, and because my period pains are only intensely bad for 2-3 days, I just get through the day as best as I can. I'm just posting this for a bit of reassurance that my symptoms are something that needs to be investigated, and it would be good to hear other people's stories about similar symptoms and your journey to a diagnosis?
Thanks in advance 😊
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Hj149
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Im so sorry about all of your pain. I just thought I’d reply as my symptoms/ story are very similar to yours. I experience all of the same symptoms, minus sore boobs and my period pains were also so bad for the first 2/3 days. I definitely downplayed my symptoms, or was made to feel like I should…
I was lucky enough to have a great GP who referred me to the gyny. However, my gyny wasn’t as good as said there are people living with a lot worse (which felt so dismissive and upsetting as I was in quite a lot of pain and really struggling with fatigue). As my gp had told me about endometriosis, I asked the gyny about it. She explained that i’d need a laparoscopy to properly diagnose endo (I’d already had an ultrasound which didn’t show anything) and said that the waiting list is really long and that I probably shouldn’t go on it because I’m probably ok. I insisted that I wanted to go on it because I thought what’s the harm in being on the list! 3 years into the wait she called and suggested I should drop off the list because it will be another wait, at least 2 years, but again, I insisted and said I wanted to stay on it.. Anyway, long story short I’ve now had my laparoscopy and they found and removed endometriosis. I’m so glad I listened to my instincts and didn’t listen to my gynaecologist! Hope that helps in some way. Stay strong and good luck on your journey x
I'm so glad you persisted! And finally got the laparoscopy 🙏🏻 honestly it's so frustrating the way we are made to feel! I'm sorry you had to wait such a long time! I myself have my first endometriosis appointment on Jan 21st, I hope you don't mind me asking but did you have MRI? I have had every scan/test except MRI but nothing has shown, just wondering if they always do MRI before laparoscopy or not 🤔 just can't bare more waiting time's! Take care 🙏🏻❤️
Yes all your symptoms are some of the symptoms that we all experience.Firstly write a list of questions you need to ask for your appointment.
I feel you need to get scans for cysts, possibly a MRI.
From my own experiences your body needs a break from Estrogen. Myself I had issues with a steriod I took but Zoladex a Implant every mth after 6mths to adapt to myself change in feeling, though a weight gain of one size I felt much improved.
Myself my bowel has been the centre of my issues and several different types of cyst on Ovaries.
Bowel bloating, inflammation generally in middle to lower trunk. Pain in back as the nerves run across especially the leftside, in groin and legs.
I take Fybogel Mebeverine each morning. I started taking half in morning, half at lunchtime. Generally you need to up water intake.
Many Endo Specialists now feel that the bowel is impacted to the point that changing diet to non wheat/gluten, maybe even lactose, Low Food Map which I have all 3. Uping fruit and perhaps no large meal but smaller intake 6 to 8 times a day which helps with the transit to empty the bowel. Try to have set times for pooing.
Read my many answers about pain relief.
My TENS Machine really was my best purchase but it does take time to learn how to use it.
If you want any other help contact me.
This is a difficult autoimmune disease to handle, many like myself have other autoimmune illnesses.
The body is struggling bring exhaustion, generally we have to find ways to help it improve its functions.
Hi Hj,Please rest assured that all the above resonates to everything I was experiencing. I was convinced I was peri-menopausal at 40. Following a vaginal scan I was unexpectedly told I had a cyst, probable endometriosis and potential adenomyosis ( excuse spelling if wrong).
I had an operative lap and hysteroscopy nearly 1week ago and plan to start taking cerelle contraceptive pill after my follow up appointment in Jan.
Everything you say and your pain is valid (I thought I was going mad). Sending you strength and support on your journey to a concrete diagnosis. Don't give up until you get the help we all need and deserve.
Hey! I think I am proof that this is worth investigating! My period pains are also only intense for 2-3 days, I have no symptoms outside my period other than mild digestive issues (bloating, little bit of cramping after eating but nothing major).
As my symptoms weren’t clear cut endo, doctors kept putting it down to other causes for years. I got fed up and finally pushed them over the past year. I’ve now been diagnosed with deep endo into my bowel wall through MRI (done privately as NHS wouldn’t do one).
Yes on paper my symptoms are nowhere near as severe as what other lovely women go through every single day, but when I do get pain on my period it feels completely abnormal (related to bowel movements/gas , very sharp or burning pains, bloating). You know your body, and if your pain feels abnormal and meets the criteria in the NICE guidelines then they should be considering more investigations!
It might help to read the NICE guidelines to get a feel of what they should be doing in terms of referral and investigations. If they deviate from these, it also helps to query why they are doing this.
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