Endometriosis UK
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Am I crazy? Bladder, UTIs, IC & Endo

From about age 14-15 (when I started my period) I remember having excruciating and completely crippling period pain. I also had a really weak bladder. I'd get bad urgency walking home from school when I neared my house/a toilet and sometimes wouldn't be able to hold it in and also urinated during my sleep. I then went on the pill from about age 16/17-21 and I don't recall suffering particularly badly from either of those things.

From the age of 21 I decided to stop taking contraception in a bid to get my body back to being in its natural rhythm. With this came painful periods again, pain during sex, intermittent bleeding, tiredness, symptoms of recurring UTIs, etc.

I ended up having 2 laparoscopys in 2012 where only small amounts of endo were found (although I've since found some people can have a lot with no symptoms, and some people have a tiny bit and have bad symptoms). Parts of my bowel were stuck to other organs, I had a few small cysts on my fallopian tubes and during my second op an 8cm cyst was removed.

After the op I felt fine. My periods were normal, my bladder was normal - all good. Until last June when the familiar bladder issue came back. Urgency to pee, sometimes unable to hold it in before getting to a toilet, symptoms of a UTI without any bacteria present, urinating during my sleep and a seriously uncomfortable feeling around what i imagine is my bladder.

My question is, does anyone else get these symptoms? And is it endo, or interstitial cystitis, which I have never been diagnosed with but have read a lot about and the symptoms seem to cross over.

I cannot cope with the symptoms any more. I regularly get flare ups where I feel like I have a UTI - right now where I imagine my bladder to be feels sore and inflamed on the inside, my urethra/vagina feels swollen and hurts, it's uncomfortable to sit down, the only minor relief from the uncomfortable feeling is straining down on the toilet or in the bath as though I'm trying to push every trace of urine from my bladder. This is always worse mid-cycle and during my period, the symptoms seem to coincide. I also can't use my menstrual cup as placing this inside seems to make my lower stomach ache like crazy. Orgasms and sex also seem to be a trigger and can make the discomfort 100 x worse.

Does anyone else experience anything like this and what is it :(

4 Replies

The swelling of your vagina could be due to a completely diffenrt problem such as vulvodynia which is where the skin gets inflamed due to a hormonal imbalance or dry vulvular skin or an allergen.

I would see your doctor about this because they can persciribe a cream to help everything calm down. You can also take sitz baths with olive oil and evening primrose oil with colloidal oatmeal, it helped me with allergies. However if it is vulvodynia than it requires a diffenrt treatment.

I stopped using all commercially made sanitary products due to allergies and the swelling has gone down too, I also am allergic to aloe Vera, and most lubricants, try to look for a natural one such as sliquid. I now make my own cloth pads and the diffenrce is amazing.

IC gets pain with penetration along the opening too, and also worsening pain with acidic food, ask to see a urologist since they can help you find what's wrong.

You may also have pelvic floor dysfunction since you have pain with orgasm and can't use a menstraul cup. It's where your pelvic floor goes into a permantly tensed too short state so you cannot relax. During orgasm it'll tense up more and cause worsening pain. If pain is all around during sex this could be a cause.

Plus you did experience incontinace? Or you still do? That's a sign of pelvic floor dysfunction too. See a pelvic floor physiotherapist and they can help each you to loosen up the muscles so that you'll be in less pain.

The reason your menstraul cup gives you worsening pain so because your giving your body something to clench around which will further tense your pelvic floor. It could also be due to the suction around your cervix where deep endo adhesion can occur around the vaginal wall.


The pain with the cup reminds me of when I had the Mirena coil put in (which was 10/10 excruciating!). It's no where near as bad, but is a similar lower tummy ache like when they first started to put it in, my gut feeling was it was to do with my cervix.

Thanks for the advice. I hadn't heard of a couple of the issues you mentioned before, so will look into them.

Just so fed up of constantly getting this horrible, uncomfortable feeling. It completely disrupts my life :(

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I would say yes - it sounds like the way your symptoms align with your cycle make it very likely that they are caused by endometriosis. I have had similar symptoms in recent years with bladder urgency and frequency, though not as extreme as yours. They too eased after surgery and with a Mirena fitted, but started to happen again. I'm now trying additional hormones. I never tried a cup, but pain would be increased by inserting or removing a tampon, and sex is very painful. I was undiagnosed for a very long time and opted to keep my periods natural (but with loads of painkillers) - I now wish I had used hormones so that my endo had not got so extreme. But every person is different, and their endo is also different. I hope you find a treatment that works for you.

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Hi, sorry to hear your story, I was diagnosed with endo on my ureteral sacral ligament (ligament connected to the uterus) in 2007 after 7 years of agony and mystery. I also had a 14cm cyst removed. I was also diagnosed with stage one endo but the pain i have experienced is excruciating so I sympathise with you and completely understand how stage one can be horrific. I have also been clinically diagnosed with diaphragmatic and thoracic endo. But I have had bladder symptoms for many years. I found taking a daily cranberry tablet helped ease the bladder symptoms. But that was about 7 years ago, now the symptoms have got much worse and my doctor doesn't know if the bladder symptoms are endo or something else. I am also having UTI symptoms but two tests came back negative, the third positive and now waiting on the fourth, after being on four anti biotics. Ps dr said anti biotics can give you thrush. The urology nurse recommended to stop using bath products like bubble bath or salts. But I would recommend at least trying the cranberry tablets, i get mine from boots. normally 3 for 2. All the best. x


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