Health Organization for Pudendal Education

Hello everybody,

I came across this forum in my desperate search for help. I 'm a 39 year old woman, living in the Netherlands and I unfortunately got PGAD when I stopped my birth control pill in 2012. I gave birth to my son in 2010 and it was a horrible child-birth, which resulted in a C-section. After that, I got on birth control and in the beginning of 2012, I threw them away. And the nightmare began. Since then, I did a lot of things: acupuncture, osteopath, I found out I have a Tarlov cyst at S2 level, I had a PRF (Pulsed Radio Frequency) of the nerve root at S2 (but that didn't do much), went to dr. Beco in Belgium and he injected sugarwater in the nerves. But that also didn't do much.

The only thing that helped me somewhat, was the treatment of my osteopath. The first time I came there, he felt my Alcock canals were completely closed, and he manually opened these and it hurted like hell. And gradually, it started to become a little bit better somedays. His explanation of the difficult and horrible condition is: my nervus pudendus and the surrounding nerves, were intrapped by scar tissue that I got over the years. I have had yeast infections, bacterial infections and bladder infections in the past. By giving the nerve space, it got time to heal. About my cyst; I was very saddened when the PRF of my nerve root didn't improve anything, because I at first firmly believed that this was de cause of my problems. I even had dr. Komisaruk in the United States reviewing my MRI (I contacted him in 2012) and he told me that this maybe could be the cause of my problems.

But my osteopath said, because of the lack of results of the PRF, that the cyst could very well be a result of the entrapment, rather than a cause. He said: just like a blister is a result of an entrapment in for example shoes, the cyst could very well be a result of an entrapment in the pelvis area.

So over the years it became better, with longer periods without symptoms. The last year, I almost had no symptoms at all. But a few weeks back, I took a morning after pill, not knowing that the consequence would me a 100% return of my symptoms. And now, I am so angry with myself, desperate and depressed! I should have known better than to take a hormone pill. I just forgot the feeling.

Does anyone have had their hormone levels thouroughly checked out? Because I think my hormones definitely have something to do with increasing my PGAD symptoms. And maybe have tips to get hormones back in balance? Hormonetherapy? And did it work for someone?

Sorry for my long story but I hope to find some help and comfort, because I'm on the automatic pilot now and can't function properly. And I have to, because I'm a single mother of two boys.

Thanks,
Renaat

Renaat,

I am so sorry after all your hard work PGAD came back. There are several people that feel stopping birth control has caused their PGAD symptoms. Please forgive yourself for taking the morning after pill. Blaming yourself is not going to be helpful to you. We have to learn to forgive ourselves. I have had my hormones thoroughly checked and when I was on birth control. The sex binding hormone was elevated a lot! I discontinued the pill but PGAD remained! When I got PGAD I stopped taking a medication that blocks testosterone. I was on the medicine because my levels were elevated. PGAD started within 3 weeks after of stopping the medication. I immediately started taking it again and it didn't help.

I am sorry the treatments you tried didn't work. I have never heard of sugar water as a treatment theory! The only treatment that has worked for me somewhat is Physical Therapy and Botox to my Bulbospongiosus muscle. PGAD is usually always caused by more than one condition. My Physical therapist feels the same way about keeping the affected muscles off the nerve to allow the nerve to heal. But, all I can do is trust her and continue to do what she suggests.

I have several small Tarlov cyst bilateral at S2, S3, and L4&5 but Dr.Frank Feigenbaum reviewed my images and said he DOES NOT believe they are the cause of my PGAD. Did you send him your images?

Having PGAD is hard enough plus being a single Mom of two boys. But, from what you described you are a fighter! Get back into that mode. At least you know osteopath works for you! Keep hope alive and I hope to read soon you are doing better!

Best of luck
Hope

Dear Hope,

Thank you so much for replying! I know I have to forgive myself and move forward, looking for a solution. But it is hard sometimes, as you probably will know with this horrible condition.
So if I'm reading your story right, a change in your hormonal system did not work for you, is that correct?
Did you find a natural hormonal balance and if so, did that decrease your symptoms?
Dr. Feigenbaum never evaluated my mri, maybe that is something that I can do.

And are your symptoms at an acceptable level now?
I'm going to an acupunturist tomorrow, and hope that he can do something for me. Has anyone ever tried electro acupuncture or neuro acupuncture?
And maybe some experience with supplements?

Thanks Hope, for reading and answering and I hope that someday there will be a cure!
Renaat

Hi Renaat,

Getting your hormones checked sounds like a good idea. Sometimes there is more than one thing going on so even if the hormones are not in a normal range there could be an underlying problem that is triggered by a temporary elevation in the hormones and you get into a cycle of pain or PGAD. Are you able to see the osteopath who helped you before and maybe see if those treatments would help again too?

Violet

Hi Renaat,

slowly I have a bad guess and so I would like to share another point of view with you.

A few months ago I wrote here that it is becoming more and more clear that antidepressants can cause PGAD. It has been known for years that these drugs cause sexual dysfunction but now PGAD is included in addition to anorgasmia, erectile dysfunction and other sexual problems. A high percentage of PGAD sufferers is related to anxiety/depression and have taken antidepressants. Now you report that after weaning off your child birth pills you also developed PGAD. And when you took a single tablet, PGAD came back. Hopeitworks has also written that some members of this forum have told that PGAD startet after weaning off the birth contro pills.

Personally I think, PGAD has something to do with anxiety/depression/trauma and, apparently, also with drugs that affect brain chemistry and perhaps the hormone system. I very carefully say, these pills seem to develope side effects like PGAD. All systems - nervous system, hormonal system, immune system - work directly together and are mutually dependent. I know nothing about the new generation of birth control pills. But I know that the new generation of antidepressants, SSRIs, can cause PGAD. Why shouldn't birth control pills do the same? In addition, there is your difficult child birth which is a trauma for a woman, even if doctors simply consider it necessary.

I know, I'm very lonly with my oppinion but more and more I'm sure PGAD has nothing to do with Tarlov cyst or anything else, and I'm sure your hormonal state will be ok.

First try to calm yourself down and avoid anger. If it is possible with two little children, learn relaxation exercises and take time for yourself. If possible in the Netherlands, look for a breathing therapist and learn to relax and breathe properly because the pelvic floor and diaphragm are directly connected and work together. The more attention you give to the genital area, the worse the symptoms will get. PGAD has a lot to do with our attention and the thoughts we think. The best would be no anger, no sadness, no guilt, if possible thoughts of confidence and that you have already managed it once and will manage it again. And of course, go back to your osteopath.

Wishing you all the best
Aristocat

Aristocat, your theory may hold true for some people but there are others like me who weren't on any medications prior to developing PGAD and I was living a very happy life without anxiety and depression. Mine had nothing to do with anxiety but everything to do with activity, exercise, and musculoskeletal anomalies. I noticed that Renaat had a difficult childbirth experience and that osteophathic treatments helped her. Birth control pills weren't the only variable. I think that for some people a combination of a damaged nerve and reactions to drugs can work together to trigger PGAD. Each person has to figure out what the problem is for them and it may not be one particular thing but a combination of things over time.

We know that SSRI antidepressants act at the level of the synapse and affect the neurotransmitters. A large portion of these are in the gastrointestinal system. But they are also throughout the body. So, maybe it is a problem in the brain for some people, as you say, but for others it might not be.

Violet

Dear Renaat

I am so sorry to hear of all your suffering and so glad you found the forum. If you go back and read old posts, it's amazing what you will find. Violet and Hope have beautifully covered so much ....... I just wanted to throw my hat into the ring in reguards to your comment on hormones where you wrote :

'Does anyone have had their hormone levels thoroughly checked out? Because I think my hormones definitely have something to do with increasing my PGAD symptoms."

When I first started to suffer with PGAD as a result of a pudendal nerve block with Depo Medrol, I went to a doctor and had my blood work done to be prescribed compounded progesterone and estrogen . I took the progesterone as prescribed for a month by rubbing it onto my leg with out incident. However, when the estrogen was added, it was HELL on Earth and triggered a violent episode that lasted about 25 hours. My PGAD was already non stop at that point but by adding the estrogen, I experienced PGAD on "steroids " . I know the doctors are more aware of these things now, but in 2010 when I was taking these compounds I asked a PN doctor if he thought it would be a good idea to go on the estrogen and progesterone and was told not to over think things. That is why I am glad you came her to share.

I am on two medications, Lyrica and Lexapro which have caused memory issues and a feeling of detachment. However they have helped significantly with the symptoms. After talking to your doctor, if you are interested in either medication, I would try one at a time, that way you will know which is helping. It has been my experience that some doctors in America write out multiple prescriptions when one medication would do as well. Hopefully things are different in the Netherlands when it comes to prescribing meds. Best of everything to you and your two boys and in finding relief or a cure .
Sadie

Hi Renaat,

I've never posted here before, but am posting in hopes of helping you and others who got PGAD from stopping birth control. I have seen posts from others here who describe the same circumstances, e.g.: http://www.pudendalhope.info/forum/view ... &start=440 It's interesting that the other poster (Nessieee) who described PGAD after birth control said her symptoms went away gradually over months and years, which is what you've also described and which is my experience too.

I also got PGAD from stopping birth control. Specifically, I took birth control for 6 months in 2007, and then came off it. I had no PGAD during or after taking birth control, that time. A year later, I went on a stronger version of that same birth control, and within the first few days of taking it, PGAD started. Ironically, I'd read about PGAD for the first time only a few months before and thought it would be the worst form of torture ever...little did I know I was soon to have it myself.

I figured birth control was the problem (note that I got after going on birth control the second time after being off it for a year) and I stopped birth control after that first month back on it. Actually, I'm not sure I finished the month of pills. The symptoms died down after a month or so of being off it, but I still had discomfort and a need to masturbate every few days to get rid of it, for years afterwards. I used to have some flareups when it was worse than normal; then it would die down and only be uncomfortable to sit (I'd have to raise my body off the chair by crossing my legs or something to be comfortable). Like you, there was a final year when the symptoms were virtually gone - this was 2013, 5 years after the problem. Then, in 2014, I went back on the original birth control pill I took in 2007 (Ortho Tricyclen Lo) thinking it could help with some side effects of other medication I was taking. I was pretty worried that the PGAD would start up again, but in my case, it didn't.

About 8 months later, I went off birth control and then I went back on it. I basically went on and off it 4 or 5 times between April 2014 and October 2015. During those times of going on and off it, I did notice the PGAD was flaring up sometimes, worse than it had been; but it would die down again and I stupidly thought I could continue taking the birth control. The last two months of birth control were Diane-35, so a different brand.

Two months after stopping birth control for the final time, the PGAD started flaring up worse than it had been. I was terrified but it would keep flaring up, dying down, and flaring up again. During much of 2016, it was worse than it ever had been in 2008, at least during the flareups. I also began experiencing pain with it at times.

Again, really stupidly, I went back on Diane-35 at the end of 2016, because the PGAD had calmed down for a month. This time the birth control gave me various other bad side effects...the PGAD didn't exactly get worse in terms of arousal, but was constantly uncomfortable, with a sense of swelling and engorgement. I stayed on the Diane-35 for 3 months.

Again, a month or two after stopping it, the PGAD got worse. I had some really bad flareups for months before it started dying down again.

The bad flareups died down after that, but the PGAD remained; it had just calmed down enough that I could live with it. The sensation of fullness and discomfort would just tend to crop up towards the late afternoon; I'd have to masturbate to get rid of it, then I would usually not notice it again for the rest of the day.

A month ago my doctor prescribed Lamotrigine, a mood stabilizer (I have bipolar disorder) which I'd been reluctant to take because I did read online that it had been known to trigger PGAD very occasionally. However, I kept getting depressed and thought this could help. I was really cautious in taking it, to the point that I started with one third of a pill, then two thirds, and the next day a whole pill. On that third day, I noticed the arousal sensations were more noticeable, so I decided it wasn't worth it to risk things getting worse. I took part of a pill the next day to try to taper off it, and after stopping it, the arousal disappeared to the point where I barely noticed the PGAD for the next month. Then, just before my period started, it got really bad again. This was very unexpected because in the past, these flareups had been linked with birth control for me. This time the sensations of arousal were different - it was verging on pain and an extremely raw, irritated feeling. It was so bad that I could barely focus on my work. This was last week. Last Thursday, I suddenly remembered an article I'd read saying that by depriving the vaginal tissues of testosterone, birth control could cause irritation in the tissues. I decided to apply Vaseline to the area, which is probably not the right product to try but I was kind of desperate...and amazingly, the discomfort and pain went instantly from probably a '7' to a '1.'

After that, I read that Lamotrigine actually affects the body's production of estrogen...something else I wish I'd known before starting it. I really don't know if Lamotrigine caused this last bout of PGAD, but I've never ever had that kind of rawness and pain before.

I am still having the feelings of arousal somewhat worse than before, and am not really sure how to resolve them, but I did want to share this article, which explains how birth control can cause vulvodynia. http://www.pudendalhope.info/forum/view ... &start=440 From what I've read, there may be many different causes of PGAD, from spinal injury to SSRI withdrawal. I thought this article may be helpful for those of us who've experienced PGAD after birth control. It might very well be tissue irritation from hormonal imbalances, which our brains are interpreting as arousal. Estrogen also affects the brain, which probably also could influence feelings of arousal, too.

I really hope and pray that your latest bout of PGAD goes away again. Please do look into the possible hormonal reasons for PGAD in your case. The more people learn about this condition, the better. And of course, it goes without saying to be very cautious with taking anything 'hormonal.' I think some of us are much more sensitive to that, and a linked article in the one I sent says something about a longer androgen receptor gene as a possible reason. https://pelvicpainrehab.com/female-pelv ... ntroversy/

P.S. My hormones have all tested normal several times. I don't think that necessarily means that a hormonal imbalance isn't causing the PGAD, though. I was told at one point after birth control that my testosterone levels were on the low side of normal (whereas before birth control I was told they were on the higher side), so just another little fact to note. I don't think they were particularly outside the normal range either time, though. Your body does have what it needs to heal itself, at least, I and others who've had the problem subside over the years after staying off birth control are a testament to that, but sometimes our bodies also need help. Hopefully we can help doctors figure out the best ways of getting us that help.