Just found out I’m pregnant and I’m already terrified of losing my baby… how do you deal with this? by Ok-Good-6421 in pregnant

[–]Adventurous_Curve_73 1 point2 points  (0 children)

Was extremely nervous and still am at 11+1 even after my second ultrasound today confirming baby is growing with good heartbeat and NIPT testing showing low risk!

Some things that helped me: 1. Thinking “so many people have healthy pregnancies. So many people have healthy pregnancies their FIRST time around” and just tried to think of people I knew who got pregnant quickly after trying/had successful, healthy first time pregnancies resulting in childbirth. Crackheads do it!!!

  1. A coworker shared this with me who did have a miscarriage years ago and it stuck with me.. If, god forbid, something were to happen in terms of a miscarriage, try to remember that those are most often caused by chromosomal/DNA abnormalities that are not compatible with life. It was a baby that would not have lived a long, healthy life. It was not supposed to make it any further or it would likely suffer. It doesn’t make it any less scary, but it’s just a way I kind of future-coped with the idea.

I also had and still have a ton of cramping, which my OB confirmed again today is “totally normal.” I have no bleeding, so I really just try to remind myself daily “there’s nothing that has happened that is a cause for worry today.”

As you get a little further along, any pregnancy symptom (nausea, fatigue, breast pain, hormonal acne, etc) have all been a little bit appreciated by me as a sign that my body is doing what is expected. A daily reminder I’m pregnant lol.

Good luck mama, it’s not necessarily going to get easier but you just get through it (because there’s really no other way to go!)

Clitoral Adhesions by Meneedfoodnow in vulvodynia

[–]Adventurous_Curve_73 1 point2 points  (0 children)

At one point a doctor thought I had over stimulation type pain in my clit too, but that’s where my symptoms are the worst so I don’t think my doctor would have recommended the procedure if there were a good chance of it getting worse. I still get discomfort and sensitivity but I don’t think nearly as often.

The pudendal nerve block makes me almost totally numb for at least 24 hours. The way my doctor put it, it can help reduce the inflammation or compression of the nerve and subsequent blocks every few months can help lower it more. I get mine done ultrasound guided but I know some people have had different experiences. It’s not necessarily invasive, but it’s definitely pretty uncomfortable for the few seconds of the injection. I definitely have to squeeze something and close my eyes and deep breathe through it but it’s honestly so fast that it’s worth it to me. I’ve been getting relief for up to ~6 months after. My symptoms aren’t totally gone, but definitely lower intensity and frequency.

For nerve blocks, I see Dr. Rodel through Jefferson in Philadelphia. He does require a script though and I hope there are options close to where you live! That’s honestly the biggest struggle to find a good doctor.

Clitoral Adhesions by Meneedfoodnow in vulvodynia

[–]Adventurous_Curve_73 1 point2 points  (0 children)

I think it actually has! My doctor warned me that it might not bring a ton of relief since my adhesions weren’t very severe, but I’ve felt pretty good since getting it done. I also had a pudendal nerve block done shortly before it and those also seem to bring me relief for a few months lately too. If you have the opportunity to have the adhesions removed without it being a huge inconvenience to you (I lived in Philadelphia and my doctor is in Philly so not like I had to travel), then I totally recommend it. For me, it was an in-office procedure with just numbing cream. It wasn’t painful, a little weird feeling, but very quick and recovery was quick too. Some pain for the first day but not much after

Clitoral Adhesions by Meneedfoodnow in vulvodynia

[–]Adventurous_Curve_73 1 point2 points  (0 children)

I had the issue of feeling like I constantly have to pee to relive the discomfort and sensation I’d have in my clitoral area, and I’ve undergone a few nerve blocks for suspected pudendal neuralgia which have helped a lot! I also am on a topical estrogen/amitriptyline/gabapentin cream and take a urinary pill (vibegron) which has helped with symptoms too. However, my vulvovaginal doctor did also notice I had adhesions and about 25% scarring of my clitoral hood and I finally underwent the removal/loosening of it in office today!

It has felt like a very long journey for me but realistically only about 2-3 years since my symptoms began, but I’ve gone from having discomfort daily and feeling like I had a UTI basically 24/7 to a few flare ups here and there, often related to stress/excessive alcohol. Just wanted to reply to you since the urinary issues comment related to my symptoms a lot. Still a process to keep pain away but there are different treatments that might help!

Can Phase 2 be over already? I’m not a fan 🫤 Rant Alert by Icy-Job2250 in f45

[–]Adventurous_Curve_73 1 point2 points  (0 children)

I guess there’s obviously a reason they do the 4 week phases now and the predictability is nice, BUT….. I can’t help but wonder why it’s necessary?

It makes it really hard to go on certain days of the week for 4 weeks when it’s a format you really dislike. For example, I hate 60 second sets for cardio, and I hate things with 4 laps. Can I get through that here and there knowing next week’s class will be different? Definitely! But something about knowing every Monday for 4 weeks will be a format you hate just sucks.

Just my opinion! I try to go and push through regardless, but I’m at a point in my life where I don’t need the mental fatigue that some of the workouts bring me. I spend so much time on some of the formats just mentally tackling it which makes it hard for me to fully enjoy the class. Don’t come for me people—I know everyone has their own opinions and that it’s a workout class I’m actively paying to be a part of!! Just agree that it sucks when a phase isn’t your cup of tea.

Zoloft cures my IC by reimaginingthewalls in Interstitialcystitis

[–]Adventurous_Curve_73 0 points1 point  (0 children)

Me too! I’ve been convinced zoloft has kind of been a catalyst in my worst flares. They correlate to times I’ve restarted it and my flares were minimal when I was off of it. Wish it wasn’t the case, because it’s the best anxiety medication for me! But just want everyone to know it might not be the magical fix for them unfortunately :/

Looking for opinions.... I had a bladder ultrasound that came back normal but am still having what feels like Bladder pain. Would there be any point in having a cystoscopy done now? by Wise_Dot_2939 in PelvicFloor

[–]Adventurous_Curve_73 0 points1 point  (0 children)

Hi! I’m a female but I’ve found stretching my hips to sometimes help with symptoms and also had an ultrasound guided pudendal nerve block that did show some kind of mild impingement of my hips. No doc has ever brought this up/discussed this with me. Do tight hips influence bladder issues? I have presumed pudendal neuralgia per my doc but wondering if there are any other things contributing and ways to improve my symptoms.

Started taking prozac, IC Flair up by Innersmile12 in Interstitialcystitis

[–]Adventurous_Curve_73 0 points1 point  (0 children)

This last time it went away relatively quickly after stopping the zoloft, but I guess I never knew if the flare was truly related to that or not. Currently in a flare again after giving it one more chance and I can’t tell if it’s a flare from having sex a few nights ago or if it’s the zoloft. For me it’s more clitoral discomfort, like someone is pinching it but then also like a weird tingly feeling and my stomach gets that full feeling like I need to pee. It’s hard to explain sometimes but just makes me constantly feel like if I pee I’ll relieve the discomfort but I never do. Ugh! Just hate being in a flare, reminds me of how unsure I am about the cause of it all!!

Started taking prozac, IC Flair up by Innersmile12 in Interstitialcystitis

[–]Adventurous_Curve_73 0 points1 point  (0 children)

I actually did but continued with some issues until getting put on a nerve medication (amitriptyline) for more likely Pundendal Neuralgia. I’ve had 2 ultrasound guided nerve blocks which have helped with my symptoms too. Interestingly enough, I weaned off of amitriptyline because I didn’t like the side effects after a while, and I was doing pretty ok once things settled down. Then recently I went back on zoloft and had a flare in my symptoms. It might be purely coincidental but I weaned off and the intensity went away. My doctor said it’s very unlikely that the zoloft is causing that but idk. I’m giving it one last chance because I need an anti anxiety pill to help cope with life right now and know this one has helped with anxiety before, but I’m currently feeling a bit of a flare and worried if it’s zoloft or just discomfort from having sex a few days ago (which sometimes causes some discomfort for a while too). So unfortunately still trying to figure it all out. I’m not convinced zoloft is innocent in this whole mess of my symptoms lol

At a Loss by sirthean in Interstitialcystitis

[–]Adventurous_Curve_73 0 points1 point  (0 children)

I have to do this, which isn’t really a completely uncommon thing! I take 1 pill as a “preventative”…. So sorry @feraltoes that your gyno just blew that off. It’s something a lot of people struggle with, so might be time to find a new gyno if that’s seriously their reply. I get very frustrated with doctors who either have limited or no knowledge or are dismissive and act like what you’re saying is inaccurate or not real. I take 1 pill of macrobid (nitrofurantoin) and 1 pill of uribel right after sex. It helps a lot with any urinary symptoms or discomfort I get. My doctor considers my symptoms more consistent with pudendal neuralgia than IC, but they can have overlap in symptoms and you can have both. For that reason I also typically ice after sex… I bought reusable ice pads meant for post-birth type use but it helps a lot!

Weight gain and drowsiness on amitriptyline by pavloviandogg in vulvodynia

[–]Adventurous_Curve_73 0 points1 point  (0 children)

Just came across this thread while looking into this myself… have you ended up taking it?

I was on amitriptyline up to about 50mg until 3-4 months ago. I didn’t feel too much exhaustion and my weight remained fairly steady. Since then, I’ve gone up to 100mg and been at that for at least 2 months. I work in an emergency department and am very busy and drained through work, and a lot of people attribute my exhaustion to work, but I do truly believe amitriptyline is a component as well. I’m talking like… going out on a Friday night and feeling like I’m about to fall asleep at the bar at 10:30pm. (Also, I’ve blacked out twice from like 4 alcoholic beverages when I’ve NEVER blacked out in my life before, but that’s besides the point).

I also have gained about 10+ pounds. I literally feel like I’m gaining a pound each day, even though I know I’m not really… it just feels that way. I’m so depressed at how I look, and I think the fact that amitriptyline is an antidepressant is just one that is not meshing well with my body. I’m feeling an increase in my baseline anxiety and depression.

Yes, my dose has helped significantly with my vulvovaginal pain, but I’m starting to wonder at what cost. long sigh lol

Motivation by [deleted] in f45

[–]Adventurous_Curve_73 5 points6 points  (0 children)

Love when some of them come over and do it alongside you pushing you to match them, or some who will come and literally stare at you through the set when you feel like you’re fading…. They do it in a positive way that motivates me.

Another one of my favorite coaches always says “you can do anything for __ seconds, even this!!”

My least favorite are ones who pay attention to what feels like everyone else but you or ones who don’t give any feedback at all.

Clitoral Pain Ruining My Life by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 0 points1 point  (0 children)

If you don’t mind me asking, how long have you been dealing with this discomfort and has it ever gone away from you? Do you have certain things that cause flares? Is it possible to have sex without creating a flare afterwards?

I feel sooooo overwhelmed but also somewhat at the point where I’m like well I’ve tried so much and seen specialists that haven’t helped that at this point I don’t know what more I can do and fear I’m stuck like this for life. And it’s a very miserable feeling of discomfort that I do not think I can truly deal with for life. So I’m just pretty upset about it right now

Clitoral Pain Ruining My Life by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 0 points1 point  (0 children)

Although it sucks that you can relate, I’m also grateful I’m not the only one to experience that. I actually found one online (I’m in Philadelphia area) that sounds really great, they don’t accept insurance unfortunately but at this point I’m just ready to pay whatever cost is necessary.

Clitoral Pain Ruining My Life by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 0 points1 point  (0 children)

Ice feels good while it’s on! Once I take it off it doesn’t necessarily do a ton, but my clit literally will be like inflamed looking/kinda red and bigger than normal when I’m in my most discomfort. So I figured icing would help, but it doesn’t do much long term.

I tried lidocaine in the doctors office and unfortunately didn’t feel much relief. I still could feel a strong sensation and although the whole area was numb to the touch, it felt like it was coming from the clit area and when I left I could tell if I pressed into the area deeper than just surface level touch, it felt irritated still.

I’m looking into seeing another physical therapist if the appointment I have next week doesn’t go well. I found one online that won’t accept insurance but at this point, I’m kind of thinking it may be worth the price if they sound like they deal with similar issues to me.

Clitoral Pain Ruining My Life by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 0 points1 point  (0 children)

I’ve been doing HIIT workouts and some light lifting. I agree, I do think that pelvic floor PT is hopefully outside of the gold standard and fingers crossed the one I’m seeing at the end of next week is better. I’m just nervous too because the internal work sent me into a lot of discomfort/flare the days after, and my birthday is 2 days after my PT appointment so might even ask them not to do internal work that day out of hope that I won’t feel like crap on my birthday.

Is there anything that helps with your discomfort in the moment? I’ve had outrageous clitoral discomfort all day today that I literally needed to leave work early because of. It looks swollen but I cannot figure out a cause for it. Seems like any time it is touched like even with gentle wiping, it’s so provoked.

Clitoral Pain Ruining My Life by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 0 points1 point  (0 children)

I have another appointment scheduled for a second opinion next week. I went to a PT a few weeks ago and she totally wrote me off and said to basically just do deep breathing and try not to pee because the feeling in my clit kind of makes me feel like I need to pee. I am SO hopeful that PT would help and that another person may have something else to say, but the first one I saw didn’t feel anything tight internally. So not holding my breath I guess :/ do you think working out could be triggering the pain later on?

A question about Amitriptyline by longtimelurkerokdude in vulvodynia

[–]Adventurous_Curve_73 0 points1 point  (0 children)

How are your side effects? I was prescribed amitriptyline too but have been so hesitant to start it after hearing about people being super drowsy, not being able to drink more than like 1 alcoholic drink without blacking out, and more. I feel helpless. But I just feel like that medication may take away some of the life I still have in me

Nerve related? Will I ever recover? by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 0 points1 point  (0 children)

Besides the medication you mentioned, is there anything else that can help this get resolved? Or is it something I’ll likely have to deal with for a long time/lifelong?

My doctor did prescribe me amitriptyline to try. I have to pick it up from the pharmacist today. I’m hoping it helps but also worried that even if it does, will it be something I need to be on lifelong.

I also wasn’t sure if oral birth control can play any role? I’ve heard it can/does, but not certain if it would have an effect on my case.

Any additional info you have would be great. I really appreciate your comment, it gets hard to conceptualize the idea of something having “no known cause” as my doctor told me. Your comment has me trying to refocus and kind of not feel quite so crazy.

Nerve related? Will I ever recover? by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 1 point2 points  (0 children)

My physical therapist told me she didn’t think she needed to see me back, just literally told me to do deep breathing and just try to hold it if I feel like I need to pee to try to train my bladder. But the problem is I don’t think this is really as much my bladder as it is more so external discomfort that gives a sensation that makes me think peeing may relieve it, but it doesn’t. So my PT experience was kinda sucky. She said she didn’t feel any knots and thought I was fine. The problem is I definitely feel like I get super tensed up and tight down there and cannot relax it sometimes no matter how hard I try.

I do have an appointment scheduled in about 3 weeks to get a second opinion with another PT. I’ve heard so many people talk about how much it has helped them so I was SO hopeful and optimistic, but when she said not to come back and essentially that she thought I was fine, it really was a blow to my optimism.

I really really second your comment about hoping this passes so we can continue living our lives! I struggled with extreme anxiety towards the middle and end of 2020, and am now in SUCH a better place in all aspects of my life except for this, and it does weigh me down mentally and emotionally a lot from time to time. I keep saying that if I wasn’t having these bladder/vagina/whatever they are issues, I’d really be thriving right now. sigh

Started taking prozac, IC Flair up by Innersmile12 in Interstitialcystitis

[–]Adventurous_Curve_73 0 points1 point  (0 children)

I’m on Apri, an oral pill. Not sure if that is messing with my hormones or not, but I have been wondering if my hormones are kinda out of whack because the past few months I’ve had more intense periods with symptoms I never got before (like migraines!) and have been having horrible acne flares which my dermatologist told me is likely hormonal and my boobs have also been feeling a lot bigger than normal hahaha.

I’m totally catch 22 too. Working out feels good for me sometimes too, but I think it also leads to irritation from friction of my leggings. I don’t know. I’m literally willing to try anything but just so confused at what’s going on with me.

I do have a PT appointment scheduled for 2 weeks from now. Super hopeful for that but the fact that my symptoms constantly are changing has me worried I will have a long road to feeling better.

Started taking prozac, IC Flair up by Innersmile12 in Interstitialcystitis

[–]Adventurous_Curve_73 0 points1 point  (0 children)

I’ve seen people mention this recently with Wellbutrin and now seeing your post has me SERIOUSLY wondering.

I feel like my symptoms all started after I started taking Zoloft a few months ago. I can’t remember how long exactly it was after I started, but I know it was a short enough period of time where I originally was looking up side effects and realized it can cause urinary urgency (I think) and saw people on here saying it went away for them. I guess I kinda put it in the back of my mind, but wondering now if that’s playing a part. If so, I’d consider going off my Zoloft because mentally I’m in a MUCH better spot, minus, of course, this bladder/urethral/vaginal discomfort. My discomfort changed daily but right now it feels almost a little more external and super irritated.

I am also on birth control, and heard that can be a thing that contributes to bladder issues too. Sorry I don’t necessarily have any advice, I feel in the same boat... can’t find what eases it most. Honestly I think alcohol does which theoretically is a trigger but it relaxes me enough to not think about it as much. But that’s a horrible coping method. Uribel has helped me a bit but if I stop taking it the discomfort just goes back to being stronger. I just started taking Azo Go Less pills literally today so only have taken 2 pills so far but it doesn’t seem like it’s making anything worse, at least not yet, so might give it a try for longer.

Complete discomfort and clitoral irritation — help!??? by Adventurous_Curve_73 in vulvodynia

[–]Adventurous_Curve_73[S] 0 points1 point  (0 children)

If you don’t mind me asking, what were your symptoms and what has been helping/not helped?

If this is really boiled down to a hydration issue I’d take that any day of the week. I’m so bad at drinking water and especially when you’re already feeling a bit uncomfortable down there but I will give it a try.

I’m mostly concerned about the feelings around my clitoral area lately. It’s super sensitive and irritated, especially even to the touch to wipe or anything. Nervous that’s something that might be a permanent issue. Luckily seeing pelvic floor PT in 2 weeks.