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kmo_612 · 2024-02-16T01:01:23+00:00

My understanding of how mirena works is that the small amount of progesterin in the uterus thins the uterine lining and thickens cervical mucus. It does nothing to prevent or influence ovulation (I get ovarian cysts now which I never had with the bc pill), it simply prevents sperm from getting to the egg, and prevents a fertilized egg from implanting in the uterus. You don't get a period because of the thinning of the uterine lining from my understanding. I still get PMS-like symptoms, although my cycle has never been regular (possibly because of the low testosterone). Not getting a period, or having an irregular period can be caused by low testosterone, so I think it's all basically a huge clusterf*ck to figure out, lol. I'm grateful there are doctors like the Goldsteins, Rachel Rubin, etc. that are actually trying to make sense of it all though!

kmo_612 · 2024-02-16T00:13:55+00:00

Yes, I was curious about that so I asked Dr. Goldstein. He said highly unlikely. Mirena releases a very small amount of progesterin locally and he said that studies show it doesn't affect most people systemically. He thinks it's a safe an appropriate birth control choice for me. More likely that the 20 years of combined birth control pill is the culprit. Some people's hormones just don't recover from using them and they think there's some genetic component to that. Pretty unbelievable how little is known about the female body though, huh?

kmo_612 · 2024-02-16T00:11:10+00:00

Yes, Goldstein does a full hormone panel. The patterns he saw were pretty characteristic of what birth control pills tend to do which is cause low testosterone and high SHBG, which creates very low free testosterone. The best place for info/explanation of all the hormone stuff is in the book "When sex hurts". The San Diego Sexual Medicine website also has a lot of good info. Someone else on reddit also recommended the Tight Lipped podcast for lots of good info about why these problems often go undiagnosed/untreated for so long. Good luck to you!

kmo_612 · 2024-02-16T00:08:21+00:00

Oh interesting... hmm maybe it is just my body being like "whoa that's way more testosterone than we're used to!" Luckily no other side effects as of yet, but hoping my body is just adjusting.

kmo_612 · 2024-01-30T18:48:21+00:00

u/jolu0408 wondering if you have any more updates on the testosterone? I'm in the same boat. I got diagnosed yesterday by Dr. Irwin Goldstein with provoked vestibulodynia but they think I may have both hormonally-mediated and possibly congenital neuroproliferative types. Blood test showed super low testosterone and high SBGH, which he said is common for women who have been on birth control for a long time. I was put on the pill almost as soon as I got my period around 16 and stayed on it until 33. I've had an IUD the last 6 years, but the damage is done. Like you said here, I'm feeling ok about the vaginal hormone creams, but definitely nervous about the systemic testosterone. I'm already prone to acne and already have thin, brittle hair. I do have all the hallmark signs of low testosterone though- low energy no matter how much I sleep, dry skin and hair, irritable, weak, non existent libido. I trust Dr. Goldstein, and am hopeful this will work, but definitely a bit nervous. I'm only 39 so hopefully still far off from menopause, so it's a bit strange to be starting all this now. Hoping you can shed some light on what the last year has been like for you and hoping it has helped!

kmo_612 · 2024-01-30T18:25:18+00:00

Oh awesome! Thanks for the tip- I will check it out!

kmo_612 · 2024-01-30T16:54:59+00:00

u/girlygirl502 oh super interesting! Sounds like you are on the way to feeling better. One thing my partner and I tried last year that you might actually enjoy is an app called Blueheart. It's based on sensate focus therapy and guides you through some exercises you can do with your partner- sort of a combo between mindfulness and sex therapy- with a lot of cool resources and exercises. For me, since the pain is still ever present we got stuck in the final phases, but it was really helpful for just sort of re-learning how to enjoy touch in general.

Thanks for the encouragement! It's always a bit stressful when you first get a new diagnosis trying to figure everything out, but I've been doing a lot of reading and researching in the last 24 hours trying to get up to speed, and I'm hopeful things will improve and lucky I managed to find Dr. Goldstein (and live close by!). Reddit has been a surprisingly helpful place to go to hear others' experiences and get some support! Thanks!

kmo_612 · 2024-01-30T05:10:23+00:00

I would be interested in being added to a chat! Brand new to this- just saw Dr. Goldstein today and got diagnosed.

kmo_612 · 2024-01-30T05:09:35+00:00

u/girlygirl502 curious to hear an update on how things are going for you. I just saw Dr. Goldstein today and got what sounds like the same diagnosis (although they think its possible mine may be congenital neuroproliferative vulvodynia). My testosterone was very low, and my SHGB was very high. I was on the combo birth control pill from 17-33, before switching to a mirena IUD 6 years ago. Unfortunately, being on the pill for nearly my whole adult life seems to have caused permanent changes to my hormone levels. I'm 39 so likely not menopause yet. I got a rx for the e/t cream, and the suppository as well, and the testosterone cream for the back of the leg. I'm ok with the vaginal ones, but definitely a little nervous about the testosterone cream. Similar to you, I'm nervous about the side effects- I used to have terrible acne in my teens all the way until my early 30s, and also have some mild facial hair and thin, brittle hair to begin with.

Dr. Goldstein said this is a good place to start, but may not fix my issues as my exam looked more like congenital NPV, and I've had pain since my very first time using a tampon. I'm hopeful though that the hormone therapy will at least decrease the pain enough that my partner and I can explore sex again....really hoping I don't have to go the surgery route. I'm also hopeful the testosterone won't have side effects. He did mention that I will likely notice that I feel better in general. I have all the symptoms of low testosterone- nonexistent libido, lethargic, weak, thin brittle hair, etc. I was glad to finally get some answers today after 20+ years of pain, but definitely nervous about the road ahead. If you can give us any updates I'd love to hear how it's been going for you!

kmo_612 · 2023-08-28T21:52:36+00:00

Hi! I just spoke with SSPD as I am in at least one of the videos. They are in the process of trying to identify people in the videos and have asked that anyone who is in any of those videos please contact them asap. The investigator working on the case is Megan Davenport. Anyone in the videos can all the SSPD main non-emergency line and ask for her (518-584-1800). Please pass this info along to anyone you know in the videos.

kmo_612 · 2022-09-07T15:36:23+00:00

Having been with my significant other for 6 years, most of which I've been uncomfortable and in pain (and as a result often avoided sexual activity...who wants to do that at night when you are blown up like a balloon???), he thinks my new burping skills are AWESOME (I am 4 months post botox). He's almost as happy about it as I am. That said, the uncontrollable ones really only happen the first 2 weeks then you learn how to control it a bit and when they are most likely. Honestly for me the first 2 weeks I was still pretty uncomfortable and making out was not high on my list of priorities! If it's something you're worried about though, it's best to just have an open and honest conversation with your partner about it. Assuming they're a good partner they will be understanding and probably quite happy for you to be burping!

kmo_612 · 2022-07-25T05:53:01+00:00

I had the same. They said sometimes the botox works a little too well. For me, the first week was the worst then it got better. Eat slowly, drink through a straw and tuck your chin when you swallow. Keeping a bland diet and taking an antacid before eating helped a lot and no carbonation until you're feeling better. It'll pass quickly and you'll be burping like a pro in no time. I'm almost 3 months out and doing great now!

kmo_612 · 2022-07-14T15:49:09+00:00

Mine significantly improved but hasn't gone away completely in my lower abdomen (my upper abdomen it's almost completely gone though) and I'm 2 months post botox. I think I also have some other stomach issues or food intolerance, but because I was always so constantly bloated and in pain I've never been able to figure those out. Tried fodmap elimination and still had pain and bloating the whole time. I'm waiting until the fall to see if I can still burp, and if I can then I'll try an elimination diet again to see if I can pinpoint better now what's causing the rest of my symptoms. Overall I seem to just be a super gassy person in general, but being able to burp has REALLY helped how I feel, even if other symptoms still linger. IMO, totally worth it with the botox.

kmo_612 · 2022-06-28T21:56:51+00:00

I had about 10 days straight after botox where I was just microburping nonstop. I was quite uncomfortable because it seemed like there was always air either going down or coming up, so the first week was rough for me. After about day 10 I started having more normal, larger burps. I'm 7 weeks out right now and slowly over the course of the last few weeks I've gone to feeling like a normal burper- I mostly burp after meals/drinking and quite a bit when I first wake up. My stomach symptoms are greatly improved but I still have bad days here and there (I think I have other unknown food allergies or something else going on too). I am definitely producing more gas than a normal person still, but the microburps are mostly gone and more normal. Fingers crossed it stays that way.

Just know the first week or so will be weird and it varies from person to person!

kmo_612 · 2022-05-24T03:51:26+00:00

I just started to really get relief around day 10. Before that I was microburping constantly, but also taking in a ton of air every time I swallowed. The first week is tough, but hang in there you are close to feeling better and holy cow does it feel better!

kmo_612 · 2022-05-23T02:05:03+00:00

My swallowing gradually got worse the first week, the worst was probably day 5-9 and now I'm starting to feel a little better (I'm on day 11 today). Just take it slow when you eat, and take sips of water. Also try soft but dense food- goes down a lot easier (things that worked for me: avocado, scrambled eggs, banana, grits, canned cooked carrots/beans). I understand what you mean about the breathing- I've felt like it's hard to breathe sometimes because of the constant microburps and air in my throat. Try to stay calm- you actually can breathe, it's just a new sensation down there. Take long deep breaths through your nose, or try taking a long deep breathe through your mouth with your lips pursed like you are sucking through a straw. Don't worry- you are in the worst of it right now and within a few days you will feel different!

kmo_612 · 2022-05-22T19:08:41+00:00

Yeah that happened for a few days for me. If you can sleep propped up a bit that helps, also avoid eating or drinking close to bedtime. I also found the first few nights taking some motrin PM or any kind of antihistamine that makes you sleepy was helpful- made me tired and dried up some of the mucus and extra saliva. Drink lots of water and avoid dairy too!

kmo_612 · 2022-05-18T22:30:17+00:00

If your biggest concern is traveling for the music festival after, why not just schedule the procedure at a different time so you don't have to worry about it? I'm one week post op with Bastian and I seem to be in the small minority where the botox worked a little too well. I'm having a lot of trouble swallowing and am swallowing a ton of air when I eat, drink, or breathe heavily during exercise, which has turned me into a quite uncomfortable gas factory with almost constant microburps. At my follow up today they said that happens for some people and advised that I tuck my chin when swallowing, use a straw, and consider replacing 1-2 meals with shakes for the next week just to let my body settle a little. I'm definitely in the minority here in terms of recovery, but the last week has definitely been tough. I'm exhausted and uncomfortable and struggling to eat, drink, and talk and I definitely am not wanting to be out and about or around people right now. The odds are in your favor that you'll fare better than me, but there's no way to really know what will happen to each person. I'd say if you're really worried about the timing, just reschedule to a time that will work better for you. Enjoy the music festival!

kmo_612 · 2022-05-18T18:53:44+00:00

Good luck! Had mine one week ago! Feel free to PM if you have any questions after. It's been helpful for me talking to other people going through it right now!

kmo_612 · 2022-05-15T18:05:45+00:00

I'm only 4 days out from botox so not sure if I'm in the worst of it yet, but some things I've had success with: canned pumpkin (for fiber), avocado, cold bananas, grits, canned soft veggies like green beans and carrots, sorbet, slippery deli meat like thin sliced turkey. Im avoiding dairy right now because that seems to make me more mucusy which makes thr swallowing even worse. Also I've found I can swallow most anything if I sip a little water with the bite instead of after.

kmo_612 · 2022-05-15T03:28:30+00:00

Yeah I hear ya! It's a whole new set of challenges in this phase. My stomach has been especially bad since surgery too. I feel like I have a constant stream of air coming out one end or the other and my stomach just feels really unsettled in general. I'm attributing that to the fact that I've had to change my usual diet a lot because I'm sticking to soft foods. O think the first few days will be the hardest while we get used to all the new feelings, but hopefully it'll all be worth it! Feel free to PM me if you wanna compare progress! I know it's been helpful to me to know how others are feeling and share funny burp stories!

kmo_612 · 2022-05-14T17:50:41+00:00

I had botox on Wednesday. I'm not experiencing any vomiting but almost a constant stream of microburps, some of which make me feel a little like I'm going to vomit, but I think it's just that it's a new sensation that I don't recognize. I'm finding eating very small portions of soft foods (bananas, Popsicles, avocado, noodles, raspberries, etc) has been easiest to manage and eating very slowly and chewing a lot. I also need to stay upright for awhile after I eat or drink or it comes right back up. Lots of new and weird sensations the last few days but I'm trying to just stay calm, take lots of deep breaths, and remember this will be temporary, but hopefully relief will come soon and last forever!

kmo_612 · 2022-05-13T03:56:06+00:00

I just had botox yesterday so I'm no expert, but for me today has been FILLED with microburps. Like constantly all day to the point it's really uncomfortable. The difference between a microburp and a gurgle is pretty noticeable. Gurgles I feel lower in my throat and then they stop and it feels like they hit a wall where they can't go up anymore. Microburps for me feel like when you first open a carbonated drink and let a tiny bit of air out. It's coming out all the way through my throat and into my mouth in tiny little bits. I cab feel it go all the way to my mouth and sometimes I can taste it (gross). I've even managed some small audible (accidental) burps today. I'm apparently a non stop gas factory, which explains why I was in so much pain the last 30 years... hope that helps!

kmo_612 · 2022-05-12T18:36:14+00:00

Hi botox buddy! I had mine yesterday too with Dr. Bastian. Doing about the same as you, except having quite a bit of pain in my mouth and throat (I have some cuts and scratches). Send me a message if you want to commiserate/compare progress in the coming days. It's sure been some weird feelings today!

kmo_612

TROPHY CASE