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Author Topic: Terrified I'll have permanent bladder damage  (Read 2475 times)

kiwiperi25

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Terrified I'll have permanent bladder damage
« on: January 31, 2025, 05:56:26 PM »

I've been diagnosed by my GP as having a bladder prolapse. I'm not sure on the grade. I'm waiting on an appointment with a urogynaecologist but it could take a couple of months to get in depending on their cancellation list). I'm in a lot of pain. Pulling pain in the pelvis when I lie down, nerve pain, tingling, numbness around urethra and general vaginal area. I can't sleep. I now notice I'm leaking urine as well. This has only come on since early December and is due to perimenopause (I'm 49).

I've got appointments with a pelvic floor physio but those aren't for a few weeks.

I'm on HRT (Estradot patch 75mcg) and Ovestin cream for VA. I've been using the vaginal cream since 7th Dec 24.

I'm terrified how quickly this seems to be progressing and I'm worried I will have permanent nerve damage due to the long wait times to be seen. Has anyone else had pain and pulling in the bladder and pelvis that they were able to resolve, what worked, how long did it take? Was surgery required? I'm open to anything to get some semblance of my life and sleep back.
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CLKD

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Re: Terrified I'll have permanent bladder damage
« Reply #1 on: January 31, 2025, 05:59:52 PM »

 :welcomemm: how long have U had symptoms and when were you diagnosed?

I am sure ladies will be along with advice.
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bombsh3ll

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Re: Terrified I'll have permanent bladder damage
« Reply #2 on: January 31, 2025, 06:11:14 PM »

I'm sorry you're dealing with this.

Have you had any previous pelvic surgery that could have played a role in this, as you mention taking estrogen but not progetogen - have you had a hysterectomy?

I am unsure about recovery times following bladder prolapse surgery, however there's no reason at this point to believe you will have permanent damage.

Do keep phoning the secretary to see about getting a cancellation or sooner appointment - squeaky wheel and all that.

I would also make sure you have had a pelvic ultrasound and a ca125 blood test in the setting of these symptoms.
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kiwiperi25

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Re: Terrified I'll have permanent bladder damage
« Reply #3 on: January 31, 2025, 06:23:18 PM »

I'm sorry you're dealing with this.

Have you had any previous pelvic surgery that could have played a role in this, as you mention taking estrogen but not progetogen - have you had a hysterectomy?

I am unsure about recovery times following bladder prolapse surgery, however there's no reason at this point to believe you will have permanent damage.

Do keep phoning the secretary to see about getting a cancellation or sooner appointment - squeaky wheel and all that.

I would also make sure you have had a pelvic ultrasound and a ca125 blood test in the setting of these symptoms.

Thanks for the quick response. I forgot to add, I was on the Mirena IUD from June 2021 to a few days ago, and my GP has given me Progesterone 200mg to take for part of my cycle to protect the uterus. I have not had a hysterectomy or any pelvic surgery other than a emergency C-section 7 years ago that didn't have any complications in recovery. I had a 38 hour labour that wasn't progressing so ended up in C-section. Just the one kid.

I will keep bugging the uro gyn secretary for an appt. I can be squeeky!

I had a pelvic ultrasound end of December and it was normal - I was able to retain the fluid and emptied fully. I will ask about the ca125 blood test. It's just scaring me how the symptoms are getting worse so quickly.

I'm taking Nortriptaline 20mg for the pain but I can still feel the movement and pulling at night, which is why I'm so worried things are moving there that shouldn't.

I am hoping a pessary can be placed next week with a pelvic floor physio and that holds things together til I get in to the urogyn.
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joziel

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Re: Terrified I'll have permanent bladder damage
« Reply #4 on: January 31, 2025, 09:23:26 PM »

IF (IF IF IF!) you were on a SUFFICIENT and high enough dose of estrogen, this wouldn't have happened.

It doesn't matter if you're on a 75mcg patch or a 75000pcg patch, or if you bathe in 75 gallons of estrogen nightly. It only matters what you absorb.

Get estrogen levels checked and make sure they are between 450-650pmol (or higher).

Far too many women 'think' they are on HRT with all the protective benefits of it, only to find years down the road that actually they may as well not have been, because they weren't absorbing it....

30% of women on the highest dose of licensed estrogen have BELOW therapeutic levels of estrogen.... (says research).

I'm so angry (on your behalf). The more I learn about how badly women have been treated, the more outraged I become.
« Last Edit: January 31, 2025, 10:16:01 PM by joziel »
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Minicat

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Re: Terrified I'll have permanent bladder damage
« Reply #5 on: January 31, 2025, 09:50:00 PM »

I'm so sorry you're going through this.  The pain and the wait are the worst parts, I bet.  I haven't had a prolapse myself, but a friend did, and pelvic floor physio was a lifesaver for her.  It took a few months of consistent work, but the pain really eased up.  She also found that certain positions helped – sleeping with a pillow between her legs made a big difference.  Have you tried that?
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VioletAquarius

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Re: Terrified I'll have permanent bladder damage
« Reply #6 on: January 31, 2025, 10:51:38 PM »

Hi, ive got a prolapse, but dont have any of those symptoms you describe. I just feel a bulge , a really uncomfortable horrible feeling.

Doing kegels together with acupuncture has really helped. I also do diaphragm breathing.

I also use vagifem to help strengthen pelvic floor due to estrogen loss.

There's a lady on Facebook, YouTube & Instagram called kim vopni/the vagina coach, she's a pelvic floor personal trainer.
« Last Edit: January 31, 2025, 10:53:37 PM by VioletAquarius »
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kiwiperi25

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Re: Terrified I'll have permanent bladder damage
« Reply #7 on: February 01, 2025, 02:53:03 AM »

joziel - I will ask my urogyn for the blood test, I have spent a fortune going to my GP (each visit is $70NZ). If I'm not absorbing it from the patch I guess there is the pill form?

I am wondering if I also have pudendal nerve entrapment or damage. From what I've read online it sound like a bladder prolapse is more like incontinence and some pain,but this pain is off the charts, unbearable nerve pain deep in my pelvis and around the urethra and clitoral areas. I get it sitting, after standing too long, you name it. I'm starting to feel quite hopeless and have lost a lot of weight due to not wanting to eat due to the pain. Nortriptaline takes the edge off but I know it's still there lurking in the background. It's the worst thing I've ever experienced.

minicat - I'm hopeful the physio will help. I've tried all sleeping positions and nothing works - even front sleeping. The pulling an pain starts up a few minutes after.Lieing in one position, then I move to another, rinse and repeat. I have pillows all over! It's so depressing.
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Gnatty

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Re: Terrified I'll have permanent bladder damage
« Reply #8 on: February 01, 2025, 07:58:40 AM »

There is another form of vaginal pessary which also contains testosterone which some women need as well as oestrogen for vaginal health. Louise Newson talks about this ( I'm sorry, I can't remember where exactly) and it's what she uses all the time because it was the only thing that stopped all her pelvic problems. Does anyone know the name of it? I think it begins with P. I think it's definitely worth looking into. xx
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MrsMitch

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Re: Terrified I'll have permanent bladder damage
« Reply #9 on: February 01, 2025, 08:13:11 AM »

Kiwi: this comment won't help as such but just wanted to add it for information really. My mother in law had a bladder prolapse and because she was terrified of doctors, she never had it treatment,  unbelievably. She had it for years and never said a word but after a stroke it was somehow discovered and she was offered surgery but refused! But my point is, she must have had it for decades with no pain, amazingly and it never caused any damage anywhere until she had lived with it for 40 years, so if it is that, I doubt the time waiting for treatment for you would be an issue. I know that's odd, but I just thought it may be a but reassuring with regards to time, for you.
Gnatty: I'd be really interested in the testosterone pessaries. Any idea where the best info for that is? Do you know if they are available on the NHS as an alternative if you're already using Testogel or only privately?
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MrsMitch

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Re: Terrified I'll have permanent bladder damage
« Reply #10 on: February 01, 2025, 08:23:06 AM »

Just looked and it seems to be called Intrarosa which us DHEA - please correct me if that's wrong! I'm seeing my GP on Monday and from the little bit of just read, it seems it's better for treating GSM than our usual treatments. So I'm going to ask her about it as I don't think my symptoms are well enough controlled. And why should we put up with things being a but better when there are other treatments out there?
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Gnatty

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Re: Terrified I'll have permanent bladder damage
« Reply #11 on: February 01, 2025, 11:03:56 AM »

Yes there is one called interosa but there is another one too! I'll see if I can track it down
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MrsMitch

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Re: Terrified I'll have permanent bladder damage
« Reply #12 on: February 01, 2025, 11:30:20 AM »

Thank you, Natty I look forward to taking a look at it.
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CLKD

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Re: Terrified I'll have permanent bladder damage
« Reply #13 on: February 01, 2025, 11:32:28 AM »

Seems you're from NZ - should have sussed due to your name kiwiperi25  ::)

Let us know how you get on.
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joziel

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Re: Terrified I'll have permanent bladder damage
« Reply #14 on: February 01, 2025, 11:45:52 AM »

kiwi, rather than moving to oral E (which increases estrone, the 'bad' inflammatory estrogen and isn't good for lipid profile, plus increases risk of blood clots) the next thing is simply to increase the patches to ensure better absorption.

I'm on 200mcg patches (2x 100mcg) plus 6 pumps of Oestrogel at the moment. I plan to try instead 300mcg patches and 2 pumps of gel as I hate putting this much gel on, but the point is that I'm on 3.5x the max licensed dose. This is partly because I don't absorb very well but also because I need a high serum estradiol level to reduce my night time symptoms and make them bearable. (They are still not totally gone, but since my estradiol is at 880pmol, I don't really want to increase further.)
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