SX21

Topic

Pain-free after hormone treatment

Sand21s

I began having sexual pain in 2005 at the age of 30. I had been having normal, pain-free sex for 12 years, and had been on the Pill for most of that time. The pain was intermittent at first, and was only with intercourse. Over time, it got more frequent and more intense – I eventually could not use tampons, and intercourse was impossible. When I tried, it felt as though my vulvar vestibule was being rubbed with sandpaper – it felt red, raw, and sore. I saw numerous doctors who prescribed dozens of creams, none of which helped. Many doctors admitted that they didn’t know what to do with me. (One doctor told me that I just needed to relax and that I should perhaps drink a glass of wine and try some foreplay before sex. As if that had never occurred to me.)

In 2008, I was referred to Dr. Arieh Bergman in Tarzana, California. He immediately diagnosed the problem as Vulvar Vestibulitus Syndrome. I suddenly had a name for this bizarre issue! He tried treating the problem with creams, which didn’t work. Then he sent me for hypogastric nerve block – outpatient surgery where for twice a week over six weeks anesthesia was injected into my lower back. I was able to have pain-free sex once during the treatment, but after that the pain came back. My next step was physical therapy. I went to Cardenas & Associates, which specializes in pelvic pain issues, for about a year and a half. Although PT didn’t cure my pain, I think it helped get me on the right path – I learned about the importance of breathing, of stretching, of getting my muscles limber so that I wouldn’t unconsciously tense up at the thought of intercourse with my husband (which only makes treatment for the pain that much more difficult). I also learned that most of my physical therapist’s patients suffered from the same symptoms as me, which made me realize I wasn’t alone.

In September 2009, I stopped PT and also got off Yaz. I’d been on the Pill for so long that I thought I should give my body a rest. Two months later, I had my first appointment with Dr. G. The first thing he did was send me for a blood test to check my hormone levels. Oddly enough, this is something that none of my doctors had ever suggested, even though it’s a quick, simple test. Turns out my hormones were all over the place – I had low dihydrotestosterone and markedly elevated SHBG (sex hormone-binding globulin). This was due to being on the Pill for so many years. Dr. G prescribed hormone treatments – testosterone gel and estrogen cream, which I was to use nightly. I was also put on a low level of thyroid pills because my test results indicated that I had hypothyroidism. I was to stay on this treatment for six months, and if the pain didn’t go away, surgery (vulvar vestibulectomy) was the next step.

I become completely focused on stopping the pain and not letting it run my life. In addition to the hormone treatments I made some major changes – I did yoga regularly to stretch out my muscles. I used a kegelcisor every night – I’d purchased it through my physical therapist but rarely used it until this year; it’s very helpful in finding the sore area and massaging it for a few minutes. I used the kegelcisor (which can be purchased online) with Slippery Stuff gel (also available online) – it’s the only lubrication that I use now. I switched from regular pads (I no longer even bother with tampons) to Lunapads – they’re reusable cotton pads; they take some getting used to (you wash and reuse them rather than throw them away), but because they’re 100% cotton, they’re so much more comfortable than regular pads, which always irritated my skin. And, most importantly, I began being more physical with my husband. By the time I saw Dr. G, we were no longer having sex. During the first three years of our marriage we were barely physical. We snuggled and kissed, but that was about it. Every time we tried to be more physical, I was so obsessed with finding out if the pain was still there that I couldn’t relax; I would rush through any kind of foreplay and hope that the pain wouldn’t be there when we tried intercourse (which, of course, it would be – all the hormones in the world won’t help if your pelvic muscles are completely tense). So we slowly started taking steps to be more physical. Intercourse was not even on the agenda – if it happened, great. If not, so be it. We knew that surgery was the next step if there was still pain, and we were both okay with that.

So we began fooling around. Even just trying to be more physical outside of the bedroom helped, just to rekindle things. After weeks of this, we tried intercourse – using a LOT of foreplay and a LOT of the Slippery Stuff gel…and we did it! And it felt good! We tried again a few weeks later and it was GOOD! We’ve had intercourse four times over the past three weeks and it’s been great. Given that we’d only had sex a handful of times during the previous three years (and it was nearly always painful), the past few weeks have been a huge step for us! I still get nervous about the pain. I still occasionally feel sore if I’ve worn tight jeans or had a tense, stressful day. That’s when I pull out the kegelcisor for a few minutes and try to relax my muscles. I firmly believe that the combination of the hormone treatments, yoga, kegelcisor, lubrication, and intimacy with my husband helped get me to where I am now.

I’m happy to answer any questions.
–Sandy

2 Comments

Relieved

I started having pain with intercourse when I was in my 30’s. The doctor I had at the time told me to do keigel exercises. I had a total hysterectomy when I was 46. No more ovaries. I was placed on estrogen only, no progesterone. The doctor who did my surgery told me I had vagnisimus and gave me the name of a psycologist to go see. I did go for about 3-4 visits but the therapist “creeped me out” so I quit going. The next doctor I went to told me I had a pelivc nerve problem so I had an ablation done. I was so happy that this doctor believed me and did not make feel like I was crazy. The ablation worked for awhile but did not last very long. A little over a year ago I heard a former co-worker mention Dr. Goldstein, so I researched him on the internet and decided to give him a try. I am now 57 and have absolutely no pain anymore. I truly hope Dr. Goldstein never retires or if he does hopefully he is able to get a successor that will carry on this most important work.

Do not put off getting your issue treated, there are more women out there with this type of problem than you realize.

Relieved

Sand21s

UPDATE: So…things are good. I’ve continued with the hormone treatments, the kegelcising, stretching, foreplay, etc., and have had pain-free sex about three or four times a month since the summer – HUGE for someone who went for three years without having sex without pain. I’ve noticed that if I stop the hormones, the pain comes back. After my husband and I began having intercourse in the summer, I got cocky and thought that I was cured. Silly me. I stopped using the hormone treatments and within a week or so the pain came back. I was devastated. I began using the creams again and within a week or so the pain subsided. A similar situation happened last month (November) when I got a bad yeast infection. My local gynecologist prescribed some medication to take care of the infection; while I was on it (for about five days), I stopped all hormone treatments. Once again, the next time my husband and I had sex the pain was back – we were unable to go through with intercourse because it was just too painful (that awful, cutting feeling…). I immediately went back on the creams and this past weekend had intercourse with no significant problems. I was mildly sore, but it was nothing like the pain I’d felt the week prior when I couldn’t go through with intercourse at all.

I still get nervous before we try to have sex and I sometimes resent that I have to use these creams and I’m not “normal” like most women. But I have to admit that the creams have helped. I also think being off the pill for a year has been a huge help, and trying to do yoga to relax my muscles is important. Fingers crossed that things continue to get better!

–Sandy

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