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Hello. My symptoms are constant but more severe flares can be provoked by various things, including my position in bed particularly if I lie on my left side or on my back. It's like the PGAD monster lives in the center of my left buttock! If I am sitting up in bed, reading or on laptop, I stack several pillows to prop up my left hip and that seems to help. I always sleep on my right side but sometimes even in that position symptoms will start raging. So yeah, definitely being in bed is the worst. I can sit up in a chair normally most of the time but sometimes a PGAD flare will begin out of nowhere, somewhere deep in the middle of my pelvis, and once it starts, good God, can last for days. Ok first off, I'm going to post a list of meds and supplements I take and things I do for flares. Most of the stuff is available over-the-counter so maybe start there? And since you're in the UK I will post a UK Amazon link (down below) to the vein health supplement that has been LIFE CHANGING for my PGAD pain and arousal symptoms. 😄 Apparently you won't find it on the shelf in the UK but you can legally buy it online without a prescription from Amazon or other online supplement companies or pharmacies. It is commonly used in EU countries for treating hemorrhoids and varicose veins. And you can still take it even if you don't suffer from these. PGAD often has a vascular component (the pudendal vein is involved in orgasm) so the supplement may help! These are some things that help me when I'm in a flare: Amitriptyline 10-30 mg dose (once in the evening). But higher doses may be prescribed if necessary. Apply lidocaine 2-3 times a day. Pyridum, which in the US is available OTC as AZO standard, Uristat (generic name is phenazopyridine) It's the stuff that turns your pee orange. Many people with PGAD, including me, get bladder spasms and irritation during a flare that present as urinary urgency and frequency. This med can help with that. Cold packs (wear 2 pairs of underwear and place the cold pack between the two, it will stay in place better that way) Muscle relaxer (I use Baclofen 5-10 mg (up to 3 times a day if I'm flaring. BUT, unless I am able to stay home in bed, I usually only take it in the evening because it's sedating). Diazepam (valium) can also be used as a muscle relaxer, but I prefer Baclofen. Tylenol and Ibuprofen, morning and night. Herbal Sitz Bath use these herbal sachets to make a tea (don't drink it) to soak in a Sitz Bath, or pour the warm tea on a maxi pad, apply between the legs, while lying on a thick towel in bed. The herbs are very calming and I am always surprised and how well this works! There are other brands of sachets, but I think Earth Mama works the best. TENs unit with electrodes applied to my lower belly. (sometimes it helps, sometimes it is too stimulating) Drink lots of water, while limiting acidic foods and beverages [especially vinegar, coffee, black teas, alcohol (especially red wine), fruit juices (esp. cranberry & OJ), and citrus fruits]. I mention this because many people with PGAD, including me, get bladder spasms and irritation during a flare that present as urinary urgency and frequency. Limiting acidic foods can help soothe an irritated bladder. Sometimes PGAD has a vascular component. Because there may be a vascular component to my PGAD, earlier this year I started a natural supplement for vein health and blood flow optimization, often recommended for varicose veins and hemorrhoids. It is sold under brand names such as Daflon or Venixxa or the various generics such as Diosmin + Hesperidin MPFF (Of the ones I list here, I tried both the Venixxa brand and then the exact generic that I linked). This supplement is affordable and available without a prescription and, at least for me, there were no side effects. I take the supplement twice a day every day! https://www.amazon.co.uk/Dulac-Diosmin-Supplement-Circulation-Hesperidin/dp/B0GW143HM4/ref=sr_1_1?crid=2P23I2QRFOVKA&dib=eyJ2IjoiMSJ9.oMXq0EwNfcVCaKHylvuVQHmOl4PbkzkoSbP7j1WzdxbGjHj071QN20LucGBJIEps.TU-Q5Ex28YEGW10o9UJEMvzpv889RS3m3WejRp3R6n0&dib_tag=se&keywords=diosmin%2Bhesperidin&qid=1782566848&sprefix=hesperidin%2Caps%2C234&sr=8-1&th=1
I'm using this supplement, too, for my pelvic and vulvar pain. Very effective! I've been taking 600 mg twice a day since February. Tried going off of it for 2 weeks in May, my pain returned to previous levels, so I'm back on and plan to stay on. I'm in the US, haven't been able to find Daflon, so I've used these two brands that I order online: Venixxa and Diosmin+Hesperidin
Apparently it's more commonly used outside the US for varicose and hemorrhoids. Neither of the Interventional Radiologists I consulted with about my imaging had heard of it! Venixxa is a Canadian product, I think, but can be ordered in the US here: Venixxa I used that brand initially then I switched to a cheaper generic (many to choose from) that I find on Walmart dot com. This is the one I've been taking since March: Diosmin+Hesperidin I think another common brand name outside the US is Daflon, or just search for Diosmin+Hesperidin MPFF. And here are a couple of scientific journal articles supporting its use for varicose and hemorrhoids: https://pmc.ncbi.nlm.nih.gov/articles/PMC9138579/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8003468/ My issue is pelvic pain. Small varicosities were found on MRV in my left vulva and vagina. It is likely the veins are entrapped alongside or around the pudendal nerve. Treating these veins with emboilzation, sclerotherapy, or stent is unlikely to improve my symptoms as they are so closely tied to the pudendal nerve. I don't have MTS or NCS. This supplement has been a godsend. My daily pain has been cut by about half, and my worsening flares are much less frequent, shorter, and less severe.
No, I didn't have this sensation before, It developed along with the PGAD. I consulted with Dr G couple years ago, but I decided against going to CA for any testing, and he does not take part in my medical care. I may be able to get similar scans and some kind of nerve testing closer to home, but I don't know if it's necessary in that I don't know if it would change my current or future treatment. The paper he wrote can be used as a guide, for you and your doctor(s). You can pull ideas for meds and treatments to try, that hopefully you can obtain closer to home! But you will have to be a very strong advocate for yourself. And be cautious. But be willing to take some risks sometimes. But I agree, talking or reading about any aspect of PGAD can be overwhelming and highly triggering. Same with engaging with new doctors about it and trying new things( meds, trigger point injections, etc). I've been dealing with this for almost 2 decades, but just this year the vascular component of PGAD appeared on my radar, and I joined Reddit, and somewhere here I learned about this supplement for vein health and blood flow optimization called Venixxa aka Daflon, or this cheaper generic Hesperidin + Diosmon MPFF. And I've gotten more improvement from taking this supplement than with ANYTHING I have tried during my entire experience with PGAD. It hasn't been a cure, but the severity of my daily baseline symptoms is down by half, and my bad flares are less severe, shorter, and occur less often. For example, prior to starting the supplement in February, almost weekly I would have bad flares lasting 3-4 days each. On the supplement, I've had only 3 flares, all much shorter and much less severe than in the past. I am thrilled. I went off the supplement for a couple of weeks recently, bad flares returned, so I'm back on now. I've been posting a lot about this supplement lately because it is inexpensive, available without a prescription, and seems to be well-tolerated (for me at least, no side effects). Wish I had known about it years ago!!!! Because my symptoms are more controlled right now, I've been able to tolerate more research and talking about it.
These are some things that help me: Amitriptyline 10-30 mg dose (once in the evening). But higher doses may be prescribed if necessary. Apply lidocaine 2-3 times a day. Pyridum, which in the US is available OTC as AZO standard, Uristat (generic name is phenazopyridine) It's the stuff that turns your pee orange. Many people with PGAD, including me, get bladder spasms and irritation during a flare that present as urinary urgency and frequency. This med can help with that. Cold packs (wear 2 pairs of underwear and place the cold pack between the two, it will stay in place better that way) Muscle relaxer (I use Baclofen 5-10 mg (up to 3 times a day if I'm flaring. BUT, unless I am able to stay home in bed, I usually only take it in the evening because it's sedating). Diazepam (valium) can also be used as a muscle relaxer, but I prefer Baclofen. Tylenol and Ibuprofen, morning and night. Herbal Sitz Bath use these herbal sachets to make a tea (don't drink it) to soak in a Sitz Bath, or pour the warm tea on a maxi pad, apply between the legs, while lying on a thick towel in bed. The herbs are very calming and I am always surprised and how well this works! There are other brands of sachets, but I think Earth Mama works the best. TENs unit with electrodes applied to my lower belly. (sometimes it helps, sometimes it is too stimulating) Drink lots of water, while limiting acidic foods and beverages [especially vinegar, coffee, black teas, alcohol (especially red wine), fruit juices (esp. cranberry & OJ), and citrus fruits]. I mention this because many people with PGAD, including me, get bladder spasms and irritation during a flare that present as urinary urgency and frequency. Limiting acidic foods can help soothe an irritated bladder. Sometimes PGAD has a vascular component. Because there may be a vascular component to my PGAD, earlier this year I started a natural supplement for vein health and blood flow optimization, often recommended for varicose veins and hemorrhoids. It is sold under brand names such as Daflon or Venixxa or the various generics such as Diosmin + Hesperidin MPFF (Of the ones I list here, I tried both the Venixxa brand and then the exact generic that I linked). This supplement is affordable and available without a prescription and, at least for me, there were no side effects. I take the supplement twice and day and my symptoms improved dramatically!! It is not a cure, but it definitely reduced the severity, frequency, and length of my PGAD flares! THIS IS HUGE! I highly recommend trying this as it is affordable, available without a prescription, and usually well-tolerated!!!
I had symptomatic IC and vulvodynia for 5 years. Both have been in remission for 16 years. What helped me to achieve and stay in remission? I took a year off from work to rest, abstained from sex for a few years, and, most importantly, began a strict whole food plant-based diet, heavy on the greens and sweet potatoes, no added oils or added sugars, no processed foods, no dairy, no animal products at all. I don't have to eat as strictly as I did for the first few years, but I naturally revert to very strict and low acid diet if I feel any twinge of symptoms coming on. The biggest influences on my way of eating have been the DrMcDougall diet and Dr Brooke Goldner's diet. Many resources for both are available online for free. My IC was definitely inner bladder wall inflammation, with Hunner's lesions (diagnosed and cauterized during cystoscopy with hydrodistension under anesthesia) and the vulvodynia was like an extension of my IC. Now, I am post menopausal and have different issues: pelvic organ prolapse, pudendal neuralgia, painful vulvar varicosities, and PGAD, none of which have not responded fully to even the strictest plant-based diet. But I definitely feel worse if eat off plan, so I've stuck with plant-based. The bladder symptoms I have now are very different from what I experienced with IC, and now are a feeling that occurs outside my bladder rather than inside. If that makes sense. From lax ligsments supporting the bladder, mild bladder prolapse (cystocele), and hypertonia and involuntary guarding/clenching trying to hold everything in place! What helps me the most for the genitourinary symptoms (urethra burning, urgency, heavy achy bladder) caused by pelvic organ prolapse and peri/ post menopause has been vaginal estrogen. I started with Vagifem tablets. But things really improved when I asked my doctor to also prescribe topical estradiol cream to apply to the vulva, urethra, clitoris. So I used the cream three days a week and insert the tablets twice a week. I don't know your age and how easily it is for younger women to to get vaginal estrogen, but I didn't start it til I was 50 and I strongly believe had I gotten on it much sooner (like in my 30s or 40s) that possibly some of my issues, like the the severity of my prolapses, which strongly contribute to my current urinary symptoms, could've have been somewhat mitigated. As needed, I take Pyridium (generic = phenazopyridine) aka AZO or Uristat, the stuff that turns your pee orange. I go on and off Amitriptyline as needed. Deep dry needling of the pelvic floor, lower abs, glutes, and hips has helped a lot for hypertonia. I know you didn't ask about these but I will add this in case it helps someone: I believe my PGAD and current deep vulvar pain have a vascular component (small but exceedingly painful vulvar varicose veins). For this I am taking a natural supplement more commonly prescibed (outside the US) for varicosities of the legs or hemorrhoids. I started with the brand Venixxa (aka Daflon) but have since switched to this generic that is bit higher dose and less expensive generic Diosmin + Hesperidin MPFF . My symptoms have greatly improved since using this supplement. When I tried going off of it for a few weeks recently, my deep vulvar pain and related PGAD symptoms increased, so I'm back on it again and feeling better 😄 Hope any of this helps.
These are my PGAD flare management tips: Amitriptyline 10-30 mg dose (once in the evening). But higher doses may be prescribed if necessary. Apply lidocaine 2-3 times a day. Pyridum, which in the US is available OTC as AZO standard, Uristat (generic name is phenazopyridine) It's the stuff that turns your pee orange. Many people with PGAD, including me, get bladder spasms and irritation during a flare that present as urinary urgency and frequency. This med can help with that. Cold packs (wear 2 pairs of underwear and place the cold pack between the two, it will stay in place better that way) Muscle relaxer (I use Baclofen 5-10 mg (up to 3 times a day if I'm flaring. BUT, unless I am able to stay home in bed, I usually only take it in the evening because it's sedating). Diazepam (valium) can also be used as a muscle relaxer, but I prefer Baclofen. Tylenol and Ibuprofen, morning and night. Herbal Sitz Bath use these herbal sachets to make a tea (don't drink it) to soak in a Sitz Bath, or pour the warm tea on a maxi pad, apply between the legs, while lying on a thick towel in bed. The herbs are very calming and I am always surprised and how well this works! There are other brands of sachets, but I think Earth Mama works the best. TENs unit with electrodes applied to my lower belly. (sometimes it helps, sometimes it is too stimulating) Drink lots of water, while limiting acidic foods and beverages [especially vinegar, coffee, black teas, alcohol (especially red wine), fruit juices (esp. cranberry & OJ), and citrus fruits]. I mention this because many people with PGAD, including me, get bladder spasms and irritation during a flare that present as urinary urgency and frequency. Limiting acidic foods can help soothe an irritated bladder. Sometimes PGAD has a vascular component. Because there may be a vascular component to my PGAD, earlier this year I started a natural supplement for vein health and blood flow optimization, often recommended for varicose veins and hemorrhoids. It is sold under brand names such as Daflon or Venixxa or the various generics such as Diosmin + Hesperidin MPFF (Of the ones I list here, I tried both the Venixxa brand and then the exact generic that I linked). This supplement is affordable and available without a prescription and, at least for me, there were no side effects. I take the supplement twice and day and my symptoms improved dramatically!! It is not a cure, but it definitely reduced the severity, frequency, and length of my PGAD flares! THIS IS HUGE! I highly recommend trying this as it is affordable, available without a prescription, and usually well-tolerated!!!