Bladder issued

[urgley]

so after my horrible experience at ovulation, my bladder is now unhappy too.

it's painful all the time, especially just before and just after peeing. I had to leave work to go home today. I went to the doctors, no appointments. Saw the nurse, no infection. Got an emergency appointment tomorrow.

could this be another sign of the endometriosis that my doctor doesn't believe I have?

any ideas what I should say tomorrow, or what painkillers work but don't make me feel like a 30 tonne zombie?!

thanks ladies xx

[Alicepirate]

I have the same thing been going for years thinking I have infection and I haven't it hurt when bladder has something in even when not full feel I can't empty properly and hurts afterwards especially at night gets me up every couple of hourS. At my lap they found endo on uterosacral ligament which has been removed and may have cause the pain lap was only 5 weeks ago still getting a lot of pain when /after/during weeing I also have adenomyosis they found in lap so "painful swollen uterus pushing on bladder and bowel " so think that's my problem I have been advised hysterectomy I am 41 though. Is it possible you have adenomyosis or endo on uterosacral ligament?? I get really bad pain at ovulation too my pain all on left side also in my sigmoid colon

. Not sure if any of this useful but I've spent ten years of on an off bladder pain with rarely an infection and just being told nothing wrong by GP and it all makes sense now I've had lap.

[Katinldn]

Hi there, it might also be worth asking your doctor about interstitial cystitis. I had similar problems after my second lap for endo - painful urination, pain when my bladder was full, pelvic pain and going to the loo about 50 times a day. Every time my body felt like I had a water infection and every time it came back clear. My consultant told me that it is not unusual for endo sufferers to also have this bladder problem together as they believe that in some women, interstitial cystitis is hormonal driven. Unfortunately, like endo, there is no cure, but there are treatments you can have to help relieve symptoms and manage flare ups. It's obviously also important to rule out endo on the bladder first but if those tests come back clear, interstitial cystitis may be worth looking into. Hope you get the answers you need and Feel better soon xxx

[Wasowski]

Hi. I have endo on my bladder and it's like I have a urine infection (with the amount of times I have to wee) the majority of the time! If I hold on too long it is very painful to empty my bladder and I do get up in the night. I have been advised to avoid diuretics but otherwise just have to put up with it for now. Push for a referral to have the endo option explored!! I use naproxen and co-codamol for pain relief. Hope this helps xx

[urgley]

another urine test that showed no infection, sent away with anti biotics.... 😵

am going back on Friday armed with loads of info about Endo to convince my doctor that's what it is.

[mbal123]

Sounds like intestinal cystitis, I was diagnosed with endometriosis with lap, and at same time had a look in bladder and it's also called painful bladder syndrome , I control through diet no acid diet avoided offers of bladder wash from consultant

[Scooteeder]

There are a number of things that can cause issues with pain, pressure and a feeling of wanting to pee a lot. If a urinary tract infection has definitely been ruled out, and you continue to see a persistence in such symptoms, then it makes sense to consider the following gynae conditions:

1. Endometriosis - endo growing in different areas of the pelvis is known to cause different symptoms, depending upon where it is located. Women can have endo on the bladder itself, sometimes it is superficial, and sometimes it can actually grow into the bladder. This sort of endo will obviously cause a feeling of excessive pressure and fullness to the bladder, making a person feel as though they need to pee a lot. There may be pain when the bladder is full, which could be eased upon emptying the bladder. You may also see blood in the pee, especially around the time of your period. Endo can also grow on, or even in, the utero-sacral ligaments. I was diagnosed with this type of endo - deep infiltrating endo of the utero-sacral ligaments. Because these ligaments run close to the ureters and pouch of douglas, they can cause inflammation in areas close to the bladder and bowel, which may manifest itself as pain and urinary urgency. This type of endo can also affect the sciatic nerve, and can cause differing degrees of pain, which can persist throughout the month, even when a woman is not having a period. Deep infiltrating endo in the utero-sacral ligaments can be very problematic, as it is difficult to remove, and surgery should only ever be carried out by a BSGE endo specialist, otherwise the risk to bladder and bowel can be high. Endo can also afflict the ureters themselves, causing blockage or constriction.

2. Adhesions - these are filmy, sticky, gluey deposits that can be caused by endometriosis itself. They can also be formed as a result of surgery, including surgery to remove endo. The trouble with adhesions is that they are difficult to get rid of, because increasing amounts of surgery can increase adhesion formation, yet the only way to get at them is to perform surgery! The sticky, gluey nature of adhesions means that they can literally stick areas of the pelvis together. They can stick organs together, they can glue organs to the pelvic wall. This will obviously cause pain, and possibly lead to dysfunction or even loss of function of any organ affected. Adhesions can afflict the bladder, and ureters, where they may cause constriction or pressure, leading to a sensation of needing to pee a lot.

3. Adenomyosis - this is where the lining of the womb becomes thickened, and growths similar to endo are found within the muscular walls of the womb. Adenomyosis can cause very heavy and clotty periods, with severe cramping. It can also cause a sensation of heavy pressure, or dragging, within the womb. Sometimes, adenomyosis can cause the womb to considerably increase in size. Because the uterus is situated close to the bladder, any inflammation or increase in size of the womb may well cause it to press upon the bladder. This may lead to symptoms that affect the bladder, such as pain, or feeling that you need to pee.

4. Interstitial cystitis - this is a type of cystitis that commonly goes hand-in-hand with endo. It is not caused by an infection, like regular cystitis, so antibiotics will not treat it. Instead, it is more likely that this type of cystitis is caused by generalized pelvic inflammation that is triggered by endometriosis.

I would advise you to keep a diary of all the symptoms that you experience. This can be useful for a variety of reasons - firstly, it documents exactly what symptoms you have, and makes it easy for you to remember all of them and explain them to your doctor. Secondly, you can detail when the symptoms occur, which may allow you to spot patterns to them. Keep a note of whether they particularly occur during menstruation, as this could be indicative of a pattern that is linked to a specific disease. Thirdly, you can note anything that you try in order to help ease the symptoms - such as painkillers - and whether it is successful or not. By doing this, you build up a lot of useful information that you can take to medical appointments with you. It gives you a clear record of what symptoms you have, when they occur, what you did to treat them, and whether treatment was successful.

I would also advise you to check out the following information:

1. bsge.org.uk - the British Society for Gynaecological Endoscopy website. This gives info on treatments for gynae conditions, and also lists approved centres for the treatment of illnesses like endometriosis. It is very important that if you have a diagnosis like endo, you are treated by a specialist, as general gynaecologists do not usually have the expertise necessary to deal effectively with the disease.

2. endoresolved.com/symptoms.html - this web page on the Endoresolved site gives a detailed breakdown of all the different symptoms of endometriosis, depending upon where it is located within the body. It is a very useful and informative start when it comes to understanding endo. It explains symptoms in detail, and also a bit about why those particular symptoms are caused by endo growths in a particular part of the body. It's very helpful for people who feel they may have symptoms of endo, but are scared that nobody will believe them.

3. endometriosis.org/endometriosis/adhesions - obviously, this gives information on adhesions and their formation.

4. adenomyosisadviceassociatio... - for advice and information about adenomyosis.

5. patient.info/doctor/interstitial-cystitis-pro

I hope there is something here that is of use or help to you. Sometimes you have to keep pushing for answers until you finally get heard, and receive the assistance that you need. It is not uncommon for women with gynae problems to be overlooked and fobbed-off for years before they get answers - my own case of Endometriosis took over 9 years of fighting before I got an accurate diagnosis and treatment. Stay strong!

Wishing you all the best. E. x

[urgley in reply to Scooteeder]

what an amazing reply, you are so knowledgeable! Thank you, I will go armed with all this information to my doctor tomorrow x

[urgley]

she still doesn't want to say it's Endo, or refer me to a bsge specialist until I have seen another gynaecologist.

BUT she did look at my symptoms diary and enter it onto my record. So that's an improvement.

I guess it's more waiting.....