I’ve got an appointment to see an endometriosis consultant next month so will hopefully finally start to get some answers then, but in the meantime I just wanted to see if anyone else had experienced anything similar to me because it can be hard to know if symptoms are endo or another condition such as IBS.
I have had the usual endo symptoms for years (painful periods, pelvic pain etc) but over the last 3 months things have really stepped up. The digestive symptoms have probably been the worst - I have a near constant feeling of someone being ‘trapped’ (like a feeling of needed to fart/poop but nothing relieves it) and although I am now going to the toilet normally most mornings, if I go again later in the day in an attempt to relieve this feeling the poop will be very thin/stringy and it makes me wonder if something is obstructing it. Also have had lots of IBS type symptoms such as cramps, loose stool/constipation, heartburn etc. I’ve tried the low fodmap diet but seems to have very little effect when things are flaring up so that’s what led me to believe this could all be endo related.
Another symptom I get which I haven’t seemed to find anyone talk about is pelvic pain (can feel quite deep) which is made worse by walking/standing (standing still seems to be the worst for it). If I am on my feet for too long on a day where I have this pain it can become very painful until I’m able to rest (and takes hours of resting to stop completely).
Really hoping that treating the endo will treat these symptoms as they’re definitely taking a toll on me physically and mentally, would love to know if anyone has had any similar experiences or any advice on dealing with them, thanks so much in advance x
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Sorry you’re suffering so much. Unfortunately yes I totally understand. I’m still under gastro and trying to find out. I can’t sit or stand for long and eating is fairly non existent apart from one meal a day.
I started cannabis recently which is a huge help.
It’s been suggested that there is nerve damage and I’ve also had gallbladder out in July.
If you think something is wrong it needs investigation and you’ll likely have to push GP, whether it’s Endo or not.
thank you so much for your response. So sorry to hear you’ve been going through this too, it really is horrible! I am currently undiagnosed as I’ve only had ultrasound investigations in the past which didn’t find anything (but weren’t done by an endo specialist as it wasn’t on my radar at the time so do wonder if things could’ve been missed) but I have an appointment with a private consultant in December as I’d had enough of waiting for my NHS referral (which has now finally come through but appointment isn’t until Feb). Hoping he will do another scan to try and confirm so I can at least know for sure it’s what I’m working with before pushing for a laparoscopy at my NHS gynaecology appointment next year. Wishing you the best of luck with your diagnosis too, I hope we can finally get some answers!
I’m sure appointment with Gynae will go well. I normally write symptoms/history for them to read. An experienced Gynae will be able to work with symptoms for a diagnosis. It wasn’t on my radar when diagnosed.
If you’re paying for a scan you don’t need a referral these days and you get the report. I paid £400 for two part MRI in the past. I went online, there are lots of companies offering good value scans, don’t go directly through a hospital.
The Gynae you’re paying to see, if they do NHS as well they can add you to their list if they want to. I’ve done it a few times.
Thank you, hopefully soon, I’ve got a scan at some point soon.
Hello, I’m sorry to hear you’re having a difficult time with your health. I have had a similar experience. I was so confused with my symptoms and if I should be seen by gynae or colorectal. Thankfully after an unsuccessful laparoscopy at my local hospital I was referred by my doctor to a specialist BSGE endometriosis centre where they have identified bowel endometriosis. I’m currently waiting for surgery.
Its the constant feeling that I need to go to the toilet but nothing happening and bowel spasms that are awful. My heat pad helps with the spams and my doctor has prescribed some other medication to help while I wait on surgery. I also get bad reflux at times and a really deep pain in my pelvis and bottom.
I hope your appointment goes well. Your symptoms do sound very similar to mine. It does take its toll mentally and physically, I felt like I was going mad and although my surgery is quite complex I’m just so thankful it has finally been identified. Please just ask if you need anything, I will try to help x
thank you so much for your reply, it really does help knowing I’m not alone in this (although I’m so sorry that you’ve experienced this too as I wouldn’t wish it on anyone!). I’ve really been suspecting that it must have somehow infiltrated the bowel, so I’m going to make sure I push for this to be investigated to try and make sure they are prepared if I do end up needing a surgery. Did they discover yours was in the bowel during a scan? I did read that it can be missed during a normal laparoscopy. My NHS referral is also at a centre that specialises in endometriosis so I’m really hoping they will be well prepared for this. I’ve also got an appointment with a private endo specialist consultant before this because I was just so tired of waiting, so I’m keeping my fingers crossed he can give me a diagnosis to take to them.
I can imagine it must be a sense of relief to finally have a diagnosis, as horrible as it all is I do think my mind will be put at rest a little knowing exactly what’s going on. Especially when the symptoms mimic so many other conditions, it’s so hard to know which investigative route to take. I wish you the best of luck for your surgery and I really hope that it’s successful in getting rid of all your symptoms. And thank you again for the response, it definitely makes me feel less crazy knowing it’s not just me who has experienced these things! X
That’s ok, I know what you mean about not feeling on your own but at the same time not wishing it on anyone.
Mine was identified by an mri scan, it was the scan at the specialist endo centre, the radiographer that wrote the report interpreted and identified the scan so well thankfully.
I spent so long questioning myself and my symptoms when it all started, until an endometriosis nurse reassured me and said your pain runs in cycles with flare ups along side your period cycle, in waves.
I hope you get the answers and help you need. My referral with the specialist started 20 months ago, I’m still waiting on a surgery date. It’s so hard now my pain is relentless & everyday.
Hi, I totally understand what you are going through. I can just about cope with the ovarian pain but the vaginal/rectal pain is sheer agony, it feels like a hot knife is being put there! My GP prescribed GTN ointment to apply to the anus/rectum which can help but gives me horrendous migraines! Sadly I havent found anything else that helps with the rectal pain but a warm bath can sometimes soothe a little x
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