Bladder / urethra endometriosis

[TennisAM]

Hi all!

I was wondering if any of you have bladder / urethra endometriosis? What are your symptoms please?

Thank you!!

[Maddie2013]

Hi I do it presents like a bladder infection burning pain and needing to wee constantly, I call it a bladder attack, I manage it with hot water bottle and sometimes pain killers, I have my own infection test sticks which are helpful as occasionally it has turned out to be a urine infection.

[TennisAM in reply to Maddie2013]

Thank you for replying Maddie, do you know where the endo is on your urinary system? Have you ever had a burning sensation near your urethra after passing urine? Do those symptoms happen daily or are they during /before your periods please? Thanks for your help xx

[Maddie2013 in reply to TennisAM]

I definitely know I have it on my bladder but I think it must be on urethra too due to where the pain and burning is but fortunately for me my symptoms have eased due to starting the menopause, but I still get very bad days but I’m hopeful it will get better, I never really had a true pattern of pain all over the place, hope you have some good days soon 😊

[TennisAM in reply to Maddie2013]

Thank you. I hope so too! I'm glad it's eased and I hope the very bad days stop for you

[Pinkmice]

Hi

Many kidney infections which can land in hospital- try to solve with cranberry tablets

from chemist,plus fluids burning pain- like sand in the wee.

With Covid around most women are staying at home resolving this issue

them-selves with hot water bottles etc

Hope this helps

[TennisAM in reply to Pinkmice]

Hi, thanks. Do you know where your endo is on the urinary system?

[Pinkmice in reply to TennisAM]

Hi

Adhere to the bladder etc plus bowels- have had major accident pulmonary embolism

which I survived but 2 years earlier my husband die of one.

Which I suffer as I found my caring Husband first over Christmas holidays - the image

plus still living in the same house. Even after years have passed by.

Next door neighbour is trying to get me to move by getting the police out to

arrest my brother for shouting at her- ( I have no respect at all for her now).

Even ( this lady) stole a Xmas present this year. Have to wait to see if and when this

lady tries again.

Going to hope that she learns - not to stress me out - as trying to apply for

a new role as loss my last job - due to endo and its effects.

Life is special I forgive people but some times- I wonder what I have done

to get this much trouble.

My birthday the end of this month- but can not celebrate as having major

work on my teeth - plus with Covid 19.

But hopefully you are feeling better- sorry love to your family

that you are blessed with everything you dream of comes true.

kind regards

[TennisAM in reply to Pinkmice]

Hi 👋 thank you. So sorry you've gone through all of this. I hope things improve soon.x

[CandleCat]

Hello, have you been diagnosed with endo?

I have similar symptoms and am being investigated for endo or possibly interstitial cystitis, or maybe something else, they don’t know yet.

I also get the burning pain after peeing and near the end of the pee stream, plus a high frequency of needing to go to the loo.

I don’t think it relates to my period, it seems to be pretty random. Do your symptoms fit a pattern with your periods ?

Xx

[TennisAM in reply to CandleCat]

Hey, I have a endo diagnosis (via laproscopy) and have a history of endo on my urethra (treated at the last lap). Last time when I had endo on my urethra my urethra was fixed, I had increased frequency daily and pain every time I passed urine. This time I'm not sure if I have endo on my urethra/bladder but my symptoms are frequency issues daily and pain when passing urine in the week before my period and the week of the period. I randomly get burning after passing urine. I got told by a urologist that it can be referred pain from my vagina.

I've been told I might have Intersistial Cystitis too, though I'm sceptical, my gynaecologist thinks it's endo and so do most the urologists I've spoken with.

What investigations are they doing? Have they told you about bladder retaining? my frequency is near normal levels thanks to that. x

[CandleCat in reply to TennisAM]

That does sound similar. I feel the burning is coming from my vagina too.

Hopefully you don’t have IC on top of that! Are they looking at removing the endo again for you?

So far the only investigations have been an ultrasound in which they mentioned my womb may be sticking to the back wall. Nothing happened after that though until I chased and chased and finally got a gynae referral. The gynae just put me on the pill (not noticed much difference yet) and mentioned possibly IC as well.

I have a follow up call in a month when I plan to insist on a laparoscopy and cystoscopy. They were trying to avoid me having it but I think it’s what I need.

I’ve been trying the bladder retraining and it has helped a bit with the frequency day to day although not at normal levels. I can’t believe 8 times a day is supposed to be the norm ! That seems so low. But it has helped, except for during a bladder attack/ flare, then I find it impossible to not go constantly.

I’ve recently been given naproxen as ibuprofen did nothing for me. It definitely works quicker to get inflammation down

[TennisAM in reply to CandleCat]

Good for you. You know your body best so don't give up on the lap/cystoscopy. They love putting people on the pill, like it's a miracle treatment. I don't find it helps much. Do you take it like normal? Period monthly? I take it back to back for 12 weeks then one week break. Its a lot better for me that way. Might be worth trying till you get a lap date.

Tbh I don't think I have IC, most likely the endo being an a-hole 😂

I am on the op list but thanks to delays and covid I don't think it will happen anytime soon.

Yeah, even 5 times a day is normal for some! I used to be a 5 times a day person!

Not sure if I mentioned, I find Traditional Chinese Medicine really good for treating endo. It's really improved my bowel situation (I have bowel endo). Worth looking into if you can afford it. Just make sure you suss out whether the practitioner has a good understanding of endometriosis at the first appt. They should also be registered with the British acupuncture Council.

Hope your consultation is productive and you get on the lap list. Hope your symptoms ease too. There's some natural things that can help too. Happy to share the info if you send me a private message. Can't post here as links to other websites aren't allowed under the rules.

[CandleCat in reply to TennisAM]

Hello, I hope you’re doing well and thank you for your tips! I thought I had responded previously but can’t find my message so wondering if I didn’t 🤔. Have you had any further news on if your endo is on the urethra/ bladder or if you have Ic?

I’ve been trying the pill and thought it was making some difference, but have unfortunately experienced a bad bladder attack again so not sure if it is endo related or ic anymore.

Xx

[TennisAM in reply to CandleCat]

Hi, nice to hear from you. I'm OK thanks. How are you doing? Sorry to hear about the bladder issues, I hope it passes soon.

I haven't had an op date, but I now know I don't have endo in my bladder as they did a cystoscopy. Pleased with that. Not sure about IC as I don't really want the hydrodistention procedure done. Tbh the pain when passing urine is only before and during my periods so feel like IC is unlikely. Once the bleeding stops the pain stops. Thankfully the frequent urination is under control thanks to bladder training.

Have you had any further tests? xx

[CandleCat in reply to TennisAM]

Hello, that’s good, also okay thanks.That’s good that you know there’s no endo on the bladder .

Are you still on the pill to try and keep the endo under more control?

The gynae is putting me on the list for a laparoscopy and cystoscopy finally but I haven’t heard anything since this. I imagine it will be a loooong time!

I haven’t had any further tests at all. Not sure how to manage it now that everything seems to have flared up again! Xx

[TennisAM in reply to CandleCat]

Hi, I do take the combined contraceptive back to back but not sure it actually helps at all. Only benefit is that I take it back to back so only have a period once a quarter.

What symptoms are you experiencing with this flare up?

Glad you're on the op list, hope it isn't a very long wait. x

[CandleCat in reply to TennisAM]

That’s what I take too but not sure it’s doing anything.

This time I had a bad attack of pain which started as a burning feeling for a day and then progressed to stabbing pains in the pelvis plus burning and the constant feeling of needing to go for 3 days. Naproxen and codeine weren’t doing anything at all to help either. Luckily the pain has gone down now but I’m still feeling the urge to go every 20-30 mins and have a heavy feeling there.

Hopefully I’ll hear something soon on the op! Xx

[TennisAM in reply to CandleCat]

Sorry to hear that. Have you heard of n-acetylcysteine. Its very good for endo and Intersistial Cystitis. For endo women take 3 tablets (600mg) a day for 3 days then a 4 day break. For 3 months. Could help, worth having a look.

Hope you get an op date soon x

[CandleCat in reply to TennisAM]

I haven’t heard of it, thank you I’ll look into it xx

[SNovack2006]

Hi all, i just had a lap on Monday specifically to address my endo and kidney/bladder issues I have been suffering with the last 4 months. The pain is unbearable. 30 years ago I was diagnosed with having endo on my urethra (and they could not remove it), 20 yrs ago it was in my uterus -I have been on bc as a treatment since i was 18 and have been ok up until now, but im getting close to menopause so my guess is that is why it is flaring up again. i am now curious to see where this has spread to next. unfortunately for me, I got very little info from the doctor except he "lasered" some tissue from my left side - so helpful!! I have a post-op appointment in 2 weeks, hope to find more info. Once i find out more i will be happy to share if that is indeed my issue. To be honest, upon first diagnosis 30 yrs ago i just had pain- no UTI symptoms. Now i have UTI and Kidney infection symptoms which line up with my cycle. However, when they test my urine there is no bacteria which is odd. Anyone else have that??

[TennisAM in reply to SNovack2006]

Hi, I'm sorry that you've been suffering through this and thank you for commenting. I really hope they caught and excised everything, not just lasered.

I would be really grateful if you could comment here once you've had your follow up. I think its wise to ask them if they checked your kidneys for endometriosis?

The symtoms you mentioned are things women with bladder/ urethra /kidney endometriosis and something called Intersistial Cystitis. Intersistial Cystitis causes frequency issues, pain (for some women) and burning sensation. Women with Intersistial Cystitis don't show any infections in their urine samples. These women sometimes have worse issues during their cycle. I don't think Intersistial Cystitis causes kidney pain.

Hope this operation solves your pain and other symptoms.

[Meggles23]

Hi there, I've had tenderness in my lower middle pelvic area since I was a teen, and nothing showed from a cystoscopy, but when I had a lap 10 years ago (I'm 40 now so my endo took 15 years to be diagnosed), where they found endo on my bladder (the peritoneum), and adhesions. I've been dismissed about it being endo for 4 years since symptoms have returned. Finally going on the list to have surgery again (I hope). I'm almost sure it's from my endo but only surgery will tell for sure. Good luck xx

[TennisAM in reply to Meggles23]

I'm sorry to hear it's been such a struggle. I hope you get added to the list and get an op date soon. Was the endometriosis attached to the outside of your bladder? I got told that because I've had a cystoscopy it's unlikely I have endo on the outside of my bladder. 🤦🏾‍♀️

[Meggles23]

Hi there, the report said it was on the bladder peritoneum, but I wasn't told much about it after surgery so I don't know exactly. I had always assumed it was on the surface of the bladder, but I had adhesions around my bowel and pelvic wall too, so there's lots going on there. Plus I have a unicornuate uterus which may be causing endo. I've been diagnosed with interstitial cystitis, lazy bladder, irritable bladder, told it's in my head...you name it. I feel that it's all endo related though. Urinary frequency, low pelvic pain on the end of urination and having to strain to get it out. Weird itchy painful spasms deep inside my vagina area, so many other symptoms. I pushed to have surgery as my gyno wants to keep trying different meds. Will be going on the pill again soon and will try to stay on it. Don't want an IUD or early menopause drugs.

[TennisAM in reply to Meggles23]

Yes, I've had all that said to me too 🙄

Glad you pushed them. I am waiting for a surgery date too. Signs of deep endo in my bowel and suggestions the bladder situation is endo too. Hope the op goes well when it comes around.

[Blue_Sky12]

Hi! My GP suspects I have endometriosis on bladder/kidneys but am still waiting for the appointment with a consultant (thanks Covid!)My symptoms are pretty much constant lower back pain, intermittent pelvic pain, stabbing/sharp pain in lower right pelvis which comes and goes, kidney pain and very tender between rib cage and hips, particularly back and sides. Intense fatigue that comes for a week or so and disappears along with elevated temperature that does the same. More recently also pain in bladder region at the end of urinating…

I’ve tried not to become a google dr but it’s been a long time of waiting for answers and worrying it’s something ominous! Endometriosis seems to fit the symptoms best so far. Have had several clear rounds of bloods and urine samples that come back with trace protein and recently blood whilst on my period… really hoping the referral appointment comes through quickly so at least I know how long the wait will be.

[TennisAM in reply to Blue_Sky12]

Hey, have they referred you to a bsge centre in your area? General gynaecologists do not have the skill to deal with it if it's on your urinary system.

I believe, an urinary tract ultrasound can sometimes pick it up if it's near/on your kidneys. Has the GP sent you for this?

Has you GP referred you to Urology? Very important a multi discipline approach is taken

Consider seeing a good endometriosis consultant privately for one appt, then you could be referred to their list. At least then you've had advice and an opinion.

Hope it all works out and I'd keep calling the hospital for cancellations xx

[Kjoyce]

Hi girls, I've been unwell since March and no answers yet. It started with burning while peeing and some pelvic/ovary pain. It's progressed to frequent urination (but only during the day), almost constant pain/burning low in my pelvis, burning feeling deep in my vagina and also in my urethra. Got my urine tested which was clear. My GP prescribed a course of antibiotics anyway which seemed to help for a few days and then it all came back. He put me on 3 more antibiotics "just in case" it was some kind of infection but they did nothing. I had an ultrasound scan of my pelvis and swabs for bacteria and STDs. All clear. I did notice the pain/burning is worse before and during my period. But my periods are actually short and not too heavy. So could it still be endo?

Oh I forgot to mention I had stage 2 endo diagnosed and removed 18 years ago. But that time pelvic pain was my only symptom.

Could it be IC with the frequency only during the day?

I have an appointment with a gynecologist in 4 weeks.

I'm really lost and fed up. Constantly worried and miserable. Feel like crying all the time. I can't help thinking it's all in my head 😢

[TennisAM in reply to Kjoyce]

Hey, it's totally understandable to feel this way. Have they referred you to a bsge endometriosis centre (if there's one nearby) or general gynae. General gynaecologists do not have the skill to deal with it if it's on your urinary system you will need an endometriosis specialist

It could be endo or IC, it's sometimes hard to tell.

I would ask to be referred to Urology too so they can do a cystoscopy and any other investigations.

When you feel down, watch your favourite comedian on YouTube, sing, dance to your favourite music, mediate, call a friend etc etc. Try to counteract it. Also journaling helps - write down you feelings.

Always remember it's not in your head. Endo can't be seen from the outside and that's not in our heads either.

Hugs xx

[Kjoyce in reply to TennisAM]

Thank you so much. I always try to keep busy and it helps but sometimes I'm just sick of this pain.My appointment in 4 weeks is with a regular gynecologist. I suppose I'll take it from there.

Thank you again xx