Hi there, my name is Megan and I’m a 22 year old uni student. I’m rather new to this group and it’s honestly so refreshing to read each of your stories and be able to relate.
I have been experiencing symptoms of what is suspected endo for around 7 years. It started with massively heavy, painful and frequent periods (every 2 weeks) which would be completely debilitating. I was put on the combined pill which I subsequently reacted to causing sickness and vomiting. After the GP found that I had significant amounts of oestrogen in my system and was adversely reacting to the extreme levels, I was switched to the progesterone only pill. For a while I had no other symptoms since my periods had stopped, caused by the pill. It wasn’t until sex became so painful that it forced the breakdown of my relationship that I realised I need help.
The doctors referred me for a scan which proved normal so a subsequent referral to gynae was done. Whilst waiting for the appointment, I was rushed into hospital with what they found to be a ruptured ovarian cyst. At my gynae appointment 3 months later, the consultant stated there was no need to go any further with investigations and discharged me with dilators for my diagnosis of ‘vaginismus’. 2 years down the line with endless pelvic pain and more excruciating sex, I decided I’d had enough. I went back to a new GP and after 3 ultrasound scans and one admission and discharge from hospital with another cyst, I am finally waiting for a laparoscopy.
However, in the past month, I have been experiencing bladder symptoms. My ever prominent pelvic pain is spreading into my bladder region and I frequently feel the urgency to pee, even when I have not drunk anything. Lower back pain is also proving extremely uncomfortable. I have no burning sensation or blood in my urine. Just feels like my bladder is being stretched and stamped on. Doctor think it’s a UTI/ kidney infection and has prescribed antibiotics but I just can’t shake the feeling that it's related to my other symptoms. Could this be possible or should I just accept that it is probably a UTI?
After 7 years, I’m starting to feel extremely fed up. I’m constantly tired and in pain and despite knowing that I will be having surgery, I’m worried that they won’t find anything and I’ll be back to square one.
I had this symptom with my stage 4 Endometriosis, it was very difficult to deal with and one of my most difficult symptoms to cope with (due to how frequently I needed to go to the toilet). It’s very possible this is linked to Endometriosis so it’s good that you’re now having a laparoscopy xxx
Hi! I am sorry you are suffering in this way. I suffered for a long time with similar symptoms and when i had my laparoscopy they found i have endometriosis on my bladder. They could not remove it all. Some days i have to urinate so much! I feel i have to explain why to some people!
Hi. I know just how you feel with your symptoms and they are all things my consultant said endometriosis suffers don't get like my back pain must be something else and cysts don't hurt.
It is all very frustrating but you know your own body. Keep going forward with it. Good luck with the laparoscopy. Take care. Xx
I'm curious to know if they ever saw a cyst on an ultrasound? I was misdiagnosed/ written off with cyst ruptures every few months despite a&e attendances and one admission. They would see fluid on an ultrasound or CT and assume that's what it was. But it can be a sign of inflammation. I also started to get bladder symptoms such as urgency to go a lot and pain in my abdomen when going at times. I ended up seeing an endometriosis specialist privately in desperation because I thought it might be. I was terrified surgery would show nothing and I'd still have unanswered questions but I did have deep endo which as he showed me on the photos after just was mm's from my ureter. It took me such a long time to get diagnosed (18 years from my first GP visit about it). You are doing the right thing by pushing forward. Your symptoms arn't normal so there should be an explanation for them out there. I really hope you get your laparoscopy soon with a thorough surgeon.
Exactly the same as you! They only ever saw fluid on the scans and assumed that that was the cause. They also said it could be the result of retrograde menstruation where period blood flows backwards into your body cavity. Whilst in hospital the first time, it took 4 days for them to even do a scan. My mum works as a nurse and if she hadn’t have been there urging them to scan me, I know it would it would have been a lot longer. Thank you so much for your advice, it really has helped x
Hi Anon2705, I have adenomyosis and suspected endo. It can cause bladder and bowel symptoms, I sometimes get a punching sensation in my bladder.
Just wanted to say that a laparoscopy doesn’t always prove conclusive to a diagnosis. I had one and they said it was clear. I was then referred to pelvic pain clinic and she said she was 99% sure I have adeno. After that any scans etc. I had they noticed the uterine lining was very thick and blurry. And an mRI showed a patch of suspected endo on my ‘pouch of douglas’
So if the laparoscopy doesn’t give any results, don’t give up! You know your own body. Good luck xx
Me too... but dont give up! Went to hospital 3 x in a row...1st ruptured cyst, then bladder infection.... then finally dr saw how bad i was... i could barely walk...he did surgery right then too see what was going on... i had a ruptured cyst bleeding all over my abdomen....& stage 4 endo with all my organs fused together... he couldnt do anything about the endo but sent me to a dr who could.... its a long process but i wish u the best....
As many of the other ladies have said, keep up the determination and follow your gut instinct to get the treatment you need. The NHS is a wonderful thing, but unfortunately not fail safe and full of misunderstanding and doctors who don't have the resources to give everyone what they need. It's a frustrating thing, but I hope it gives you some strength to know you are not alone in taking some control in steering your diagnosis ship.
I found the results of my laparoscopy an immense relief, to have it in pictures and words what was wrong with me. It sounds like there could be some connection between your bladder symptoms and endo, whether it is actually on your bladder or nearby...
I've found a specialist centre really helps, as I see the same consultant almost every time, so I don't have to repeat things.
You are strong and resilient and you have our support. xx
It sounds like you suffer from oestrogen dominance, severe endometriosis, possibly a contracted pelvic floor and interstitial cystitis. You might also suffer from thickening of uterosacral ligaments if you have back pain and all x-rays for the spine come back fine.
Has your doctor prescribed urine tests before prescribing the antibiotics?
I highly suggest you DO NOT take antibiotics unless the bacterial culture comes back positive.
In the meantime, seek an EXPERIENCED EXCISION SURGEON.
Progesterone-only pills can be very beneficial as you wait for a laparoscopy.
I also suggest you check out healendo.com for tips on how to treat oestrogen dominance.
You have a long way ahread of you and I hope you follow my suggestions. I'm here if you need anything!!
My doctor prescribed a short course of antibiotics which I wasn’t happy about and haven’t taken since she didn’t test my urine at the time. She asked me to drop down a urine sample yesterday so I am awaiting results
Thank you so much, your advise has been so helpful xx
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