Frequent urination

[Zelda5]

I got diagnosed in March this time last year with stage two Endometriosis/Adenomyosis which was found when the Dr. was doing a tubal and ablation for heavy periods. After surgery, he told my husband that in 3-5 yrs I could need a hysterectomy due to the fact of the Adenomyosis causing bleeding behind the ablation burn which could build up overtime. He seemed surprise that I didn't have more pain than I did. I did have a lot of cramping the first few days of my period but it was manageable with Ibuprofen. It was all the bleeding and being anemic that bothered me the most. Now Ive been getting more pain in my lower back and like a burn when cleaning up around the house. Worse of all is the excessive peeing and the feeling that I never completely empty my bladder or at times feeling like I've gotta go really bad and it only being a dribble and even worse yet is the leakage. It's just getting to the point that it's really affecting my life and I'm afraid of getting to far from a restroom for fear of having an accident or just being uncomfortable, so I go to the restroom several times before going anywhere. I don't know if this is caused by the Endo etc. and should I go back and see the gynae or go see an Urologist instead. I know the gynae is going to want to opt for a hysterectomy and I'm not sure Im ready for that. Has anybody else been in a similar situation? I'll take any advice given. Thanks!!

[avelvetcrowbar]

Ive had this exact problem! I constantly have to wee, can only release a little bit most times. Sometimes i can even need to go less than 5 minutes after ive just been! I know how life controlling it can be! Its really affected my studying at university. I tried to put ip with it for a good 6 months after my last laparoscopy to remove endo but just couldnt cope so i went back to my doctor and hes referred me to urology. My urologist is now sending me for scans and also a cystoscopy. You shouldnt have to be so uncomfortable! Know your body and if you feel something may not be right - contact you doctor. Us ladies know when something isnt right. Hoping you manage to get something sorted! Just know youre not alone in having all the urinary problems. Im worried it could mean endo of the bladder and such but ill have to wait and see!

Jordan

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[Zelda5 in reply to avelvetcrowbar]

Hi velvetcrowbar,

Thank-you for your kind words and we sound like we're in the same boat. Hopefully, the Endo has not invaded your bladder and they can treat it fairly easily. Please let us know how it goes with the Urologist because I know I'm miserable and I can imagine you are too. Best of Luck!

[avelvetcrowbar in reply to Zelda5]

I will! Im still waiting for an appointment letter for my scans and cystoscopy in the post even though its been weeks since i saw the urologist! Pfft. Nhs for you! Im dreading it to be honest. I really am. But just want to get some relief if nothing else. Hope you feel better soon. X

[confusedandworried]

Hi I have adenomyosis and endo.

I was diagnosed with endo 20+ years ago but last year initially found 2 symptoms that my endo specialist put down to Adeno (as times gone on its gotten worse and I can tick pretty much all of the symptoms of adeno so agree).

One was irregular periods that would either be late, early, really heavy with palm sized clotting and start- stop - my period would be in full flow to suddenly stop one day and start again the next!

But at that stage the thing that bothered me the most was the constant peeing. I have a dog with a lot of energy who needs a lot of walking but it's got to the point where I have to stick close to a loo or go somewhere quite and with bushes to duck behind 😣. One weekend my husband and I went for a 3 hr walk and we counted I went to the toilet 6 times in that 3hrs! It's worse with activity but even at night I go every 2hrs so am knackered really. I also get daily sciatic pain now down the backs of my thighs and the lower small of my back.

I am scheduled for a total hysterectomy (ie uterus and cervix removed) for the Adeno and excision surgery for the endo in less than 2wks time. The surgeon vehemently believes in preserving the ovaries due to health benefits. I know I have endo on my bladder also which he will shave off.

I have always wondered whether it's the Adeno or the endo causing the constant weeing but ultimately I have most of the symptoms of adeno (including nausea and fatigue that I can only describe as being the worst jet lag I've ever experienced). Therefore it's helped me come to the conclusion that a hysterectomy is the right option for me at this time even though at 39 (although admittedly no spring chicken compared to some) I feel too young to have to deal with this 😣.

However what I would say for you is that unfortunately adeno can mimic other culprits such as Lindle has mentioned and interstitial cysitis. It may be better for you at this stage if you are unsure about a hysterectomy to rule out all other potential suspects. At least then you may feel more confident with whatever you decide. After all at the risk of stating the obvious a hysterectomy is a big op that can't be undone!

I wish you the all the best.

[Zelda5 in reply to confusedandworried]

You know I have often thought about the Adeno having made the uterus larger and in my case my uterus is also tilted so I often wondered if the Uterus itself wasnt putting pressure on the bladder. Im also worse when up moving/walking around but fortunately I haven't been getting up at night to go but when I first get up in the morning it's almost painful and I gotta get go quickly or pee my pants. I also don't want to be sitting on my duff all the time either and it seems that does seem to help slow down its pace a bit. I hope your surgery goes well and you get some relief! Please keep us updated and thank-you for the well wishes!

[confusedandworried in reply to Zelda5]

Thanks. I know what you mean about not wanting to sit down all the time. I have a treadmill and sometimes I can't even manage jogging on it for 5 mins now as the movement makes me want to wee badly despite going to the toilet before getting on it. I'm having to settle for walking on incline now as I feel I can hold it better. Even so I only last 30mins & have to get of to go to the loo 😣. Am nervous about surgery next week but also just want it to be over. My only concern now is that I've read it's not uncommon to have bladder problems after a hysterectomy! Needless to say I do not want to be any worse then I am now! Oh to be a man! X

[WriterPippin]

I have frequent weeing and I recently got it really bad and it turns out it was a really difficult to shift infection, completely unrelated to my other symptoms. I know you probably have already had it checked but if not it might be worth doing so. Hope it goes away I know its an awful symptom xx

[Zelda5]

Hi Lindle,

Thank-you for your well thought out answer! I am 43 yrs old and I was hoping when I first sought treatment was to take a pill that could help take the edge off like tranexamic acid but they felt I needed a D&C because my uterus was enlarged. They questioned whether I had fibroids which was plausible cause my mother had had them. After, the D&C if I thought my periods were bad before they became a whole lot worse afterwards and after a few months they still weren't letting up, so I agreed to the ablation even though I really didn't want one but at that point I was desperate. Your right the Dr. did use a laprascope when he was doing the tubal and he took a couple of pics of what looked a lil like webbing and no I don't believe it was a thorough examination. The weak bladder is a constant thing but I do think it worsens right before my period like now it's been in high gear and I can go several times in an hour and I even joked to my husband about getting some Depends. My lower back doesn't tolerate stooping at all anymore and I have to take rest breaks just to get thru cleaning the shower for instance and it comes on like widespread lower back pain/burn with some stiffness. Keeping a diary is a very good idea and I will try that. I did notice the last time I was in St. Louis they had a Endo speciality clinic at the hospital so I'll make sure into check into that later on, but for now I will take your advice and seek the help of a Urologist. Thanks so much for the advice and I wish you good health!

[Zelda5]

Hi, WriterPippin,

No actually I haven't had it checked, but I so hate going to those kinda of Drs. I've got serious modesty issues. After my son was born, I just never went back to the follow-up, and it took ten years before I did go back. I've been putting this off like I always do. I hope this is not a dumb question but what do you mean by "shift infection"." Are you referring to a bladder infection? Thanks!

[Zelda5]

Hi Lindle,

Thanks again for the great advice. Sometimes, I have difficulty just getting started because I'm not sure what to do and I'm so very indecisive. The back pain we have sounds very similar even though I'm sure it has nothing to do with the bladder urgency. That was a good point about hurting or cramping before and/or after urinating...I don't have that. I do remember some of of the other posters saying something similar who had Endo bladder. My mom and brother both have bone degenerative disease so I'm definitely keeping my ovaries if I were to need a hysterectomy. With some pain pills, I could get thru the back pain but it's getting harder to get the ones that work for me because they are narcotics and Drs. are getting very leary on prescribing them anymore but I can stretch a normal 30 day supply for months because I only take them when I absolutely need them. Also, thanks for the links...I'll take a look at them.