I am female, aged 34 and have been experiencing pelvic pain for the last 6 months which is causing a lot of health anxiety.
It began with pelvic and lower abdominal pain and a bit of kidney pain on the right hand side. The pelvic pain was similar to period pains and sometimes a really intense burning pain.
Since then the pain seems to be mostly concentrated in my groin area, labia and now a little bit at the bottom of my rib (front and back). The groin pain seems to also sometimes move into my upper inner thigh and buttock. (All on the right hand side). I thought it could be kidney stones based on these symptoms but a recent CT scan has ruled this out.
I’m not experiencing the pain all the time - on days where I do feel it, it can come and go but sometimes can linger for a long time. There are also some days or even a whole week at a time where I feel normal and no pain at all.
I also don’t feel as though the pain is as bad as it was, so I don’t know if it is gradually going away (or if this is even something that could happen) or if I’m just used to it being there so don’t think it is as bad.
Brief history of tests etc. so far:
August 2024: Confirmed UTI, received antibiotics
September 2024: still experiencing pain, received another course of antibiotics
September 2024: Urine test clear – referred for trans-vaginal and kidney ultrasound
October 2024: Ultrasound came back clear
November 2024: urine test clear, referred to urology
December 2024: urine test clear, referred for CT scan to check for kidney stones
January 2025: CT scan clear
While it is really positive nothing was identified in my two scans, I can’t help but worry about the pain being caused by something more sinister that hasn’t been picked up on the scans as I don’t know what else it could be.
Has anyone had similar symptoms?
Apologies for the long post, thanks for reading!
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JTMN
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It's take over 3 years. I've got to a point where 2 gynecologist and a vascular surgeon have said its most likely PCS, as they have ruled out other things it could be. Unfortunately they refuse to do anything about it. The vascular doc said that he has not known anyone to benefit from surgery and at times it's made it worse. I said about going private and he said it would be a waste of money. I have lupus and other health conditions, so I don't think a private clinic would help or it would cost even more. I'm 47, so I'm praying that the menopause brings some relief. I've been totally gaslit my entire adult life by doctors. Because of this neglect, I racked up so many diseases.I hope you have better luck.
I have pcs and have had surgery. It certainly does help the symptoms as my pain has gone completely so your vascular doctor is wrong. Keep pushing them. Don’t accept what they say if you know they are wrong. It sounds like you’ve been neglected enough. Don’t accept it , go back. Be a nuisance if you need to and demand answers. ..
Thanks Millie.It was total gaslighting! I think it's because they think, oh she'll be through the menopause at some point. But that could be 10yrs still. I have lupus so atm I cannot take HRT, so I my hormones are all over the place. I never know if it's going to be a bad PCS day or not. Hopefully I will get my varicose vein done, and then I will ask to get 2nd opinion.
When you get the symptoms how are you getting relief, what do you do, what do you take, is there anything you do that increases the issue or you have had to stop doing because it appears to create the pain and discomfort?
Hi, there's not anything I've noticed brings the pain on particularly. I feel like when I'm standing it isn't as bad or goes away but it's hard to identify any sort of pattern.
A few things you mentioned I can relate to. I went very many years before I was finally taken into hospital as an emergency and forwarded for a CT scan, I was diagnosed with an Occult Inguinal Hernia on the right. The Hernia was made up of omentum, the layer like an apron that covers and protects our organs. It had found a way through, I had a repair in at the British Hernia Centre (BHC) in London where the very experienced surgeon was convinced I did not have a inguinal hernia because like every other consultant had not been able to palpate the hernia. It was only because I had requested a copy of my CT scan from the hospital who identified the Inguinal hernia and providing this to the surgeon he further confirmed by his own BHC Radiology team that it was true. Surgery took place the following day. I was asked if I wanted a photograph of the hernia, I did. Afterwards the surgeon said the hernia was large and I could of had this for very many years, even born with it. He also told me that I had taught him something in his 30 year career and that was never to ever again discount a woman when considering if she has an Inguinal hernia just because he could not palpate the hernia. Having an Occult (hidden) Inguinal hernia in a woman is not very common and very much overlooked.
Unfortunately for me I now have a left inguinal hernia, at the moment it is small but I have a surgeon who says she wants to consider having this repaired prior to other surgery.
Next consideration. I was diagnosed last June with Hypertonic Pelvic Floor by a Gynaecologist and referred to the pelvic floor dysfunction team, yet to be access dye to the following.
July 2024 I decided to have a Proctogram Defecating MRI because I felt I had more going on within my pelvis, pelvic floor and bowel. Turns out I have something called a sigmoidocele which has been graded as a grade 3. The grading is based upon the descent for a particular point within the pelvis and measured to the lowest loop of the sigmoidocele. Sigmoidocele means your sigmoid has gone into the pouch of douglas and dropped down into an area it should not go, similar to what happens with hernias.
The pouch of douglas it an area that sits above the bowel and vagina, if you think about the skin in between your rectum and vagina and went straight up between that area you would eventually reach the pouch of douglas , I also found other names used to describe the same area: cul-de-sac, rectouterine pouch,, rectovaginal pouch, anterior cul-de-sac, excavatio rectouterina, vaginal fornix.
My Sigmoidocele is affecting my vagina and my bowel, it is pushing down putting pressure through my posterior compartment and my vaginal, middle compartment. It causes lots of pain and discomfort which comes and goes. It affects the inside of my thighs. Likely due to the hypertonic pelvic floor which my surgeon believes at this moment in time is perhaps a good thing knowing what's going on above.
I had a laparoscopy 2 weeks ago where my pouch of douglas was shoen yo be absolutely full of my sigmoid colon and penetrating down through this area in between the vagina and bowel. Not only that but my pouch of douglas has formed another level much lower down on the right. My surgeon has had to go away and think about what surgery needs to be done to help me. She has told me I have 2 exceptionally unusual rare things going on, I called them weird, she called them special.
I see the surgeon today and hope in the last 2 weeks she has had time to think about a way forward.
A little further comment on the Proctogram Defecating MRI. This MRI can look at so much in the vagina, bladder, urethra, rectum, bowel, pelvic floor etc. It has been the best MRI that I have had in the last 8 pelvic MRI'S and CT's I have had. None of the others would show up what has been going on. The Gynaecologist, Urologist, Colorectal and Gastroenterologist would not have been able to identify this. None of them could even discuss or give me any guidance or advise on where to go and who to talk to. I have been in contact with people up and down the UK trying to find help. Eventually I have found a Colorectal Surgeon who has been able to discuss things, but even she has never experienced what I have going on and told me none of the consultants I have conversed with would be able to because this is rarely seen.
Is it rarely seen because very few of us are considered for Proctogram Defecating MRI... A sigmoidocele has been reported in women who have had their uterus removed, I have not, had children, unfortunately I do not have children, connective tissue issues which I do have in the form of Ehlers Danlos and I also have Behcets.
Apologies if this is long winded but just wanted to suggest other possible way to look at where your pain and discomfort is coming from and other tests available to identify things going on in the pelvic region.
Over the last few years I have continued to have a downward pressure / like a weight / pain/ discomfort on the mid section of my pelvis through to vagina, feels like I am holding something up. Right sided pelvic pain radiating from top of pelvis bones towards mid section, all along bikini line. Left sided discomfort and intermittent pain and discomfort from inside left pelvis, like descending colon, then along to middle from the left. Coccyx pain, on the left of it but not all the time. Uncomfortable sitting upright, I sit kind of not upright but on the back part of my bottom of sitting very forward. I have to take medication day and night to stop constipation, without this my symptoms are much worse, changed my diet to try and eliminate constipation. Also I do not empty my bowel fully, at the very last part.
For a very long time, like 20+ years I was told I had nothing going on, on the right, after emergency hospital visit I was diagnosed with an occult (hidden) inguinal hernia, it was a large hernia but not able to be palpated hence why it was repeatedly missed.
Not long after the repair, Jan 2018, I spoke to my GP and said I felt the same kind of downward pain and discomfort, could I have a left inguinal hernia, answer a resounding NO.
I have had 2 abdominal CT scans, 5 pelvic MRI, small bowel MRI. Colonoscopy, SeHCAT scan, lots of other tests. A Gynaecologist examination diagnosed me with hypertonic pelvic floor and I neeed a referral to go to pelvic dysfunction team to lean how to relax my pelvic floor and then restart pelvic floor exercises, I eventually got this appointment next week. Gynaecologist also diagnosed grade 2 rectocele but you need not worry this is nothing and will sort itself out with pelvic floor exercises...
I was immediately not convinced I knew there was more going on, it just did not match my feelings.
My gastroenterologist had mentioned the Proctogram Defecating MRI about 18 months earlier, January 2023, saying it would be the last MRI she could think of but she wanted to wait until my diagnosis from another MRI to reconfirm I have a left inguinal hernia which was being looked at by surgical. So I do have another left inguinal this time but it's small and not large enough to be the culprit of my pain and discomfort.
So after seeing the Gynaecologist last June I paid privately in July to have the Proctogram Defecating MRI and got my GP to refer me when I discussed everything with her. My gastroenterologist was more than happy to deal with the results when they came in...
So July 2024 I was diagnosed with a grade 3 sigmoidocele, my sigmoid has gone into the pouch of Douglas and descends from here into a grade 3. The descent is measured from grade 1 to 3, similar to other pelvic floor issues rectocele etc. Only the measurement goes from the same line and measures the furtherest loop of the sigmoidocele. This measurement is seen on the defecating part of the MRI. A sigmoidocele is not diagnosed through any other way, so I have been told. They are very rare and only usually discovered during other surgical procedures.
Unfortunately my Gastroenterologist had to refer me on to Gynaecologist and Colorectal both these consultants when I checked said no its not me and referred me to one another, it's been an absolute nightmare trying to find someone to talk to and even now my colorectal surgeon has never seen anything like this or what's happened in the pouch of Douglas.
I had a laparoscopy 3 weeks ago, again I have paid privately just so the colorectal surgeon could have a better look at my pouch of Douglas. The laparoscopy shows my sigmoidocele is seen filling the pouch, when she pushed it to one side she has now found a strange recess kind of defect which is much deeper on the right, the sigmoidocele is going through here and then loops back up and continues on its way to the bowel. Sigmoidocele and rectocele appear from my research to go together. Not sure what else I have said, unfortunately not had children, still got my uterus, other than right inguinal hernia I have had no abdominal surgery. I am sure I have missed things 🙃 I have Behcets disease and Ehlers Danlos. Very hard sometimes to know what to blame for different pain and discomfort.
Even if I had never got the diagnosis I have I would recommend the Proctogram Defecating MRI to absolutely anyone who has any kind of undiagnosed pelvic pain, or simply that what they have been told just does not seem to match with what they have been told or feel or not responding to treatment. The fact is this MRI picks up so much it is incredible, regardless of which part of our bladder, vagina, womb, bowel, pelvic floor. All 3 compartments and more. It is the best money I have spent on my health.
Anything else please just ask, if I think of something I have missed I will get back to you. I have not reread this so hopefully it's legible x
Thank you for taking the time to add so much detail, much appreciated!
I generally feel fine, i would say the pain is pretty mild and it doesn't stop me from doing things, it is more just annoying and im very conscious of it when its there which then makes me get anxious and start catasrophising about what it could be. When there is no pain I feel great. I've had a blood test and also done some vaginal swabs and stool sample this week so will see what/if anything comes back from those. Strange feeling hoping they are all fine but then also just wanting an answer of what's causing it!
Similar start to my journey. Do not get me wrong I can go days feeling OK but that feeling inside the central downward pressure never goes away, just varying degrees of pain and discomfort. Really pleased to hear you are getting some tests sorted out. Keep me posted on how you are getting along. Life is a very lonely journey at times when nobody seems to know or understand what is going on in your body. I am grateful for this forum and others on healthunlocked.
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