Hello,
Just wondered how you were all doing and where you are in getting a diagnosis?
I'm currently with colorectal for some tests, been referred to urology for tests and pain management. Still having awful symptoms. Doctor has agreed that if I have no diagnoses after everything then she will refer me to a bsge centre.
Hope you are all coping Ok, I know how mentally draining this can be too x
I’ve had a negative lap, was meant to go for a colonoscopy but my gp caught wind of that and put a stop to it before it happened as he believed me (I didn’t want it and had already cancelled it once) and felt it was pointless putting me through that when I have no bowel symptoms, they won’t refer me to pain management cos as i pointed out, how can you refer me to pain management when we don’t know what’s causing the pain for sure, so he referred me to a hospital that’s bsge and has bsge gynaecologists, I have an appointment for a few weeks time (been waiting forever!!!), I’m not seeing a bsge gynae though, just a regular one, so I’m hoping they’re gonna refer me to one of the bsge gynaes, it’s mentally exhausting but I don’t have a choice, this is what you gotta do x
They were inside me 4 times before they found it. Lasered it off and discharged me. Spent last two years trying to be seen at bsge clinic. They are taking me seriously and having ore op tomorrow for 5th lap but this time more pain more symptoms x
Oh holleymuzz that is awful ! Good luck tomorrow x
I had a lap last year where they found adhesions and scar tissue but told me there was definitely no endo - scary thing is, this was a surgeon that people are often referred to if they have severe cases of really deep endo.
I then had the worst year of my life in terms of pain and symptoms. Gynae refused to see me and my GP tried to refer me to just general surgeons. I found a gynae at another hospital that I wanted to see so saw him privately first in December and then got referred on the nhs. Managed to get everything done really quickly and had my second lap in March. He found endo and lasered it off, and I’ve got my follow up next week.
Don’t be scared to stand your ground though and ask for a second opinion. I was fortunate that my gp believed that even if it wasn’t endo, it was definitely gynae related so when doctors in hospitals were telling me it was IBS pains (I don’t even have IBS) she didn’t believe them anyway. And thankfully she refused to accept the “sometimes women are just in pain and you need to learn to live with it” line too x
I had my 1st laparoscopy in Feb last year, they found adhesions and my right ovary was stuck to my tube with scaring. I got told it was a PID which I have been fighting to this day, I was checked for STI's before going out with my ex at the time and I made him get checked after my surgery as I was so worried and again it all came back clear.... It's so frustrating and mentally draining constantly having the same discussions and feeling like your getting nowhere. I have finally been referred to a BSGE nurse, just waiting for my appointment to come through hopefully I will get some outcome out of this. My new pill has calmed things down a bit but I still get 2 weeks of pain and horrendous bloating the majority of times. x
Hi all, can I ask what is a bsge centre? I’ve only recently been diagnosed with Endo following a Laparoscopy just over a week ago. I was sent home with no information about how bad my Endo was, where they found it or how to cope with the pain after surgery. I had a docs apt yday and they said there was no letter from the surgeon to my doctors, just a note to tell me to take Cerazette for three months and then they’ll see me again. I do not want to take this pill as I’ve had a bad experience with it in the past and I don’t even know why I’m supposed to take it! I too, am mentally drained, after many years of wondering why I am the way I am, I still have no answers going forward 
Hello,
I had a lap in December last year which came back absolutely from general gynae, they diagnosed me at the time with chronic constipation which wasn't one of my main symptom and was always linked to my cycle anyway. Decided to go see a bsge surgeon privately who referred me back to his NHS clinic and was baffled by how my old consultant ignored most of my symptoms. I am now waiting a lap with one of the 3 endo specialists at the NHS hospital (they are all part of the bsge center there).
Xx
I'm glad we can all stick together as sometimes it can feel really lonely.
My doctor has been amazing and has done everything I've asked. I wanted to have all these tests done first so when I do get referred to bsge it will hopefully help if they are clear. I'm having rectal bleeding only on my period so I feel it's been missed on my bowel and I also have bladder issues.
Some days I feel so strong but others when the pain is dragging me down I just want to curl up and not have to deal with it.
Glad we can help each other through all of this and the stories where it is later found is so encouraging xx
I had a negative lap last month however after seeing my gp on Monday he read in my notes that my bowel is stuck together from adhesions typically caused by previous surgerys. This was my first surgery and my surgeon didn't take any biopsies either. So there is a good chance mine might of been missed. I'm seeing a private specialist on Monday as he's doing 10 minute free consultations, if I don't get a good gut feeling from him I'm going to travel up country to see a nook Dr. He's in London and I'm in Devon so desperate times! But willing to do anything now to get to the bottom of my pain. Reading people's stories on here and on fb has been so invaluable and has really motivated me to not give up! Think the 'best' doctor lines so far has been, 'we all get discomfort on our periods, what makes you more special than anyone else'
'deal with the side effects of birth control or just suck it up with your periods'
'it sounds like a muscle spasm especially as you describe the pain as labour contractions, it won't show up on a lap as a general will relax the muscles'
I cried and was angry after these statements were said but now I look back and find it funny (and equally worrying) that there are so many clueless doctors out there regarding this condition!
Yes this is so true unfortunately and I don't think is going to change anytime soon. The comment i had at my second consultation regarding my bowel, bladder, pelvic and nerve pain was that "they are all separate issues". Although they all started when I came off the pill grrrr.
Can I ask you a question regarding your bowel adhesions, can you feel them attached at all, I only ask as I sometimes get this pinching like feeling around my rectum (I can only describe it as pinching because I'm not sure how to describe it) I don't feel it constantly but it is every day? X
Hi I know this is an old thread but hoping someone is still active.
Had first lap last week which came back negative. I don’t want endo but can’t believe that my pelvis looks healthy. I have some horrible symptoms, all point to endo, had a lump removed from abdominal wall which is suspected scar endo... I’m confused and once I’m healed will be asking for a second opinion.. but where do I go from here.
So confusing. Disheartening that I’ve got no answers x
Hi, im still floating about on here. Have had some personal stuff going on so haven't been as involved. Its been over a year now since i came off the pill and had all the pelvic trouble. Ive recently had a colonoscopy and MRI. I have a urology app next week and another gynae app in a couple of weeks. My pain is getting bad again and ive started to become physically sick now when im due on. The bleeding from my rectum has got worse too. Hoping for another laparoscopy soon to have the places checked that should have been first time round. Its been a long struggle and very tough recently but ill continue to fight until i know whats going on.
Endo scar tissue would suggest to me that you have it, maybe they will tell you more at a follow up?? X
Question for women who have had children with endometriosis
Those who have been diagnosed...
How many Laps should you have?
Hi Ladies,
People who have endometriosis in the bowel and had operation, did you have to have a temporary storma? How long do they mean "temporary"?
