Please help :(

[Kibellboo]

Hi, I'm Kibell, 27yo F, UK.
Atm I'm suffering with a full swollen feeling in and around the anus that burns, sometimes stings and random crawling/pins and needles sensations. It aches a lot too and I sometimes feel like the muscles are slowly moving. Sometimes the burning spreads around my pelvic floor. If i poke around I can feel the sharp pins and needles sensation. It's very briefly relieved by moving/changing positions but quickly comes back.

Any opinions? Thank you ♡

[Kibellboo]

Update: it now feels like something is stuck in my rectum whenever I pee, especially at the end of my stream

[Kibellboo]

I've noticed that it's less painful when I'm sitting or standing, and at it's worse when I'm in bed laying down. I think the softness of the bed seems to make it worse? Bm doesn't seem to do much but unsure.
And it gets worse throughout the day. It's almost non existing at night except a non-painful feeling of something small stuck on the surface.

[Kibellboo]

My history:
- 2016 withdrew from antidepressants, developed PN symptoms (mainly pgad and also this swollen feeling). Was stressed, tensed uncontrollably (akathisia). Also apparently a kidney infection (but unsure - they just knew there was inflammation. They did all sorts of tests which came back clear). Swollen pain went away after long antibiotics course (but unsure if it was a coincidence).
- 2018 withdrew again, stress/tension, same things. Again, had a UTI. Swollen pain didn't go away with antibiotics but went away on its own. Poop sample was normal.
- 2021 smoked weed, withdrawals came back 100x worse, stress/tension, no UTI but had a hyperactive bladder. Swollen pain which went away quickly on its own. Poop sample was normal.
- Now, no triggers/drugs, but swollen pain has come back out of nowhere, constant for over a week (longest ever). I have stress/tension, and a UTI that's now healed. Pgad is also flaring (unusual as it was almost fully gone).

I've had a lot of stress and tension in the past so I can't imagine it's just that. The UTI thing is kinda inconsistent?
And one of my issues is I'm unable to take antibiotics or most medication atm due to my akathisia. I'm also mostly housebound and can't get any doctor to come out to me. I have no idea what to do but I'm in so much pain.

[Violet M]

Welcome to the forum. You say that you've had UTI's before. Were they cultured, showing actual bacteria or were they diagnosed based just on symptoms? Sometimes symptoms of pudendal neuralgia are similar to symptoms of a UTI.

I wonder if a physical therapist who treats pelvic floor issues would do a house call. Might be worth asking them. Otherwise, I'm not sure what other options you would have if no doctors will come to your house. Do you know anyone who would be able to take you to an appointment?

You could try some over-the-counter topical pain relieving creams or ointments and see if that helps. Extra-strength vagisil helps some people. For the anal symptoms you could try some hemorrhoid creams or for deeper pain some anal suppositories containing steroids or muscle relaxers such as valium.

Have you had an MRI to see if there is anything obvious in your spine, like a tarlov cyst, that could be causing your symptoms?

Violet

[Kibellboo]

Welcome to the forum. You say that you've had UTI's before. Were they cultured, showing actual bacteria or were they diagnosed based just on symptoms? Sometimes symptoms of pudendal neuralgia are similar to symptoms of a UTI.

I wonder if a physical therapist who treats pelvic floor issues would do a house call. Might be worth asking them. Otherwise, I'm not sure what other options you would have if no doctors will come to your house. Do you know anyone who would be able to take you to an appointment?

You could try some over-the-counter topical pain relieving creams or ointments and see if that helps. Extra-strength vagisil helps some people. For the anal symptoms you could try some hemorrhoid creams or for deeper pain some anal suppositories containing steroids or muscle relaxers such as valium.

Have you had an MRI to see if there is anything obvious in your spine, like a tarlov cyst, that could be causing your symptoms?

Violet

Hi, thank you! The tests usually showed blood or something unusual but I can't remember exactly what anymore unfortunately. I didn't test it this time as I just assumed based on the symptoms.
That would be great but I don't think the NHS has anything like that as fas as I know, and I'm completely broke financially with the cost of living etc. I have people who can take me places but I have other health issues that are the main reason I struggle to leave the house, especially for appointments. The main one atm being akathisia.

Thank you I'll look into those! Thankfully the swollen pain is almost gone now but I'm now getting burning, stinging and PGAD everywhere else in my pelvic floor. I'm just so confused why it's all flaring up again.

In 2016 when it all started I had a full spine MRI, CT, and an x-ray of my pelvis (although this was all once the pain had already pretty much died down), plus multiple specialists examined me. They didn't really give any detail except that I was fine. So I don't think I have a cyst or anything like that.

Also - I'm having trouble editing and sending messages, it says my IP has been blacklisted sometimes, I'm not sure what to do, do you know what that means?
Thanks!

[Kibellboo]

I'm now getting digestive issues, mostly loose stools, and excessive vaginal discharge. I've had these each time I withdrew from a drug but I haven't done anything drug-related since the last withdrawals in 2021.
Is digestive issues and excessive discharge a symptom of PN? For some reason I couldn't find the answer on Google.

[Violet M]

I can't remember hearing of those 2 symptoms being related to PN but maybe there are other forum members who have. But your other symptoms are similar to what other PN patients experience. I guess as I think of it, back in my early days of having PN, I had a lot of nausea because I was so scared of what was happening and I didn't have a diagnosis. But I'm not sure it was exactly what you would call digestive issues.

Regarding the IP address being blacklisted, we have made an announcement that it is happening to the moderators as well as other members and it is in the process of being fixed.

viewtopic.php?f=3&t=11182

Violet

[Balenul]

My history:
- 2016 withdrew from antidepressants, developed PN symptoms (mainly pgad and also this swollen feeling). Was stressed, tensed uncontrollably (akathisia). Also apparently a kidney infection (but unsure - they just knew there was inflammation. They did all sorts of tests which came back clear). Swollen pain went away after long antibiotics course (but unsure if it was a coincidence).
- 2018 withdrew again, stress/tension, same things. Again, had a UTI. Swollen pain didn't go away with antibiotics but went away on its own. Poop sample was normal.
- 2021 smoked weed, withdrawals came back 100x worse, stress/tension, no UTI but had a hyperactive bladder. Swollen pain which went away quickly on its own. Poop sample was normal.
- Now, no triggers/drugs, but swollen pain has come back out of nowhere, constant for over a week (longest ever). I have stress/tension, and a UTI that's now healed. Pgad is also flaring (unusual as it was almost fully gone).

I've had a lot of stress and tension in the past so I can't imagine it's just that. The UTI thing is kinda inconsistent?
And one of my issues is I'm unable to take antibiotics or most medication atm due to my akathisia. I'm also mostly housebound and can't get any doctor to come out to me. I have no idea what to do but I'm in so much pain.

How you got free of Pgad ? is a demon......worst symptom i ever had .Also appeared after i stopped Zoloft...

[Balenul]

My history:
- 2016 withdrew from antidepressants, developed PN symptoms (mainly pgad and also this swollen feeling). Was stressed, tensed uncontrollably (akathisia). Also apparently a kidney infection (but unsure - they just knew there was inflammation. They did all sorts of tests which came back clear). Swollen pain went away after long antibiotics course (but unsure if it was a coincidence).
- 2018 withdrew again, stress/tension, same things. Again, had a UTI. Swollen pain didn't go away with antibiotics but went away on its own. Poop sample was normal.
- 2021 smoked weed, withdrawals came back 100x worse, stress/tension, no UTI but had a hyperactive bladder. Swollen pain which went away quickly on its own. Poop sample was normal.
- Now, no triggers/drugs, but swollen pain has come back out of nowhere, constant for over a week (longest ever). I have stress/tension, and a UTI that's now healed. Pgad is also flaring (unusual as it was almost fully gone).

I've had a lot of stress and tension in the past so I can't imagine it's just that. The UTI thing is kinda inconsistent?
And one of my issues is I'm unable to take antibiotics or most medication atm due to my akathisia. I'm also mostly housebound and can't get any doctor to come out to me. I have no idea what to do but I'm in so much pain.

May i ask you think antidepressant gave you a real pudendal neuralgia ? I read on other websites about antidepressant and pudendal neuralgia connection.Maybe you or Violer or someoane knows more about the connenction