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Grateful for surgery

raninan

Hello I’m a 34 year old woman and I suffered from provoked vestibulitis for over eight years before having a vestibulectomy with Dr. Irwin Goldstein. Before developing vestibulitis, I had a normal happy sex life with no pain or worry. My trouble started after having a routine UTI when I was 25. After taking a round of antibiotics, the bacterial infection went away, but I was left with persistent urinary discomfort. Soon after, I began to have a very painful burning sensation at my vestibule during intercourse. In the months and years that followed, I went to several doctors and explored, with limited success, many treatment options for my pain including: acupuncture,herbs, special diets, anti depressants, pelvic floor therapy, bio feedback, homeopathy, hormone creams, lidocaine, pudendal nerve block, hypnosis and even psychic readings (I’m truly open minded).

The urinary discomfort, for the most part faded, but I was left with extreme pain (a burning, cutting sensation) when we attempted intercourse. The pain was so severe, that over time we just gave up on intercourse all together. We still maintained a strong sexual connection through intimate touching, massage, oral sex, and I could still have orgasms, but the penetration option faded away – the pain and suffering just weren’t worth it. Even more difficult than the actual pain of vestibulitis is the emotional stress it creates. For the majority of my six-year marriage, my husband (a very dreamy guy) and I had to abstain from intercourse because it was so painful. Not being able to have sex, not being able to start a family, and not being able to openly discuss things with our friends and family was extremely difficult and we both experienced depression and helplessness from time to time. As more and more of our friends and family started having babies, I, a former social butterfly type, began to dread showers, weddings, and parties, where inevitably, people would ask us when we were having kids. I could usually hold it together enough to smile and say “hopefully soon”, but later would have myself a good cry and indulge in a little “why me” self pity. But life does go on and we made a conscious decision to make the best of our lives despite our circumstance. We traveled, took long walks, cooked good food, started seeing a therapist, and eventually opened up to our closest friends and family about what we were facing. Confiding in people helped me to feel less alone and gave me a sense of relief- I could finally let go of my secret and just be me.

I also slowly realized that feeling sorry for myself, as good as it felt sometimes, wasn’t really going to get me anywhere, and that I needed to pay more attention to all the good things that were going on in my life – namely my wonderful, handsome husband, the beautiful city we lived in, our careers, and all the people who loved us. I learned from one of the doctors I was seeing to gradually shift my attention from everything I felt was wrong to everything I wanted in life. I made lists and wrote visions of my highest hopes (pain free, passionate intercourse was always on there along with a healthy happy baby), and read them frequently. This didn’t cure my vestibulitis, but it opened my heart and helped dissolve some of the anger and resentment that was clogging up my life. I also kept trying new approaches to relieving my pain including vaginal dilators and estrogen cream (topical estrogen cream was one of the more effective treatments I tried over the years and I still use it on occasion for dryness). It took me over three years to work up to the largest size dilator, and it was an up and down journey, but it did make it possible for us to transition to intercourse. The dilators took some of the sting away from the vestibulitis, but overall the results varied wildly – sometimes I would feel fine afterwards, but other times intercourse would really flare up my vestibule for days, or bring about another wave of urinary discomfort. I knew I needed a better solution and as luck would have it, last summer my sister in law urged us to watch an episode of 20/20 that dealt with sexual pain. The show featured women who had vestibulitis that were completely healed by an out patient surgery (vestibulectomy) and went on to have pain free intercourse and become pregnant. It was the first time I had ever heard of someone completely recovering from vestibulitis- not just managing it for the rest of her life. For a few more months, I wasn’t quite ready to think about the surgery, but then last December I had an awful flare up after intercourse, that sort of cleared my head. I realized that I needed a big change and concluded that if I was a good candidate for surgery, I would have it. We learned about Dr. Goldstein from one of the doctors featured on 20/20 and from the day I first called his office, I had a great feeling about him.

Dr. Goldstein was able to clearly explain vestibulitis to my husband and I in a way that made so much sense, plus he was one of the warmest, friendliest doctors we had ever met. What a relief to finally meet a doctor who actually knew my condition inside and out. After a few routine diagnostic procedures, he confirmed that I had a classic case of vestibulitis and that I was indeed a good candidate for surgery. This was thrilling news to me! Finally, I would have an opportunity to truly heal my pain, not just for a few hours or weeks, but forever. My surgery was scheduled about a month after my first visit with Dr. Goldstein, and thankfully, it went smoothly and as planned. I was in such a fog as I woke up from the anesthesia that I actually asked my nurse “did you guys forget to do my surgery”. She laughed and told me it was already over. The trip from the hospital to our home in Pasadena also went well, since I was completely numb from the procedure. I slept soundly on my little bed of blankets in the back seat. My healing after the surgery seemed to come in waves every few days. The first five days or so were the hardest (oddly day five was the worst of them all and happened to fall on Valentine’s day) so I really took it easy- I got plenty of rest, walked around the house slowly as much as I could, did sitz baths, and watched about a thousand episodes of The L Word (a good show for celebrating the female body). After ten days or so, I started to feel some relief from the pain and began to ease off the pain meds, but I still took it easy. After two weeks, I could definitely move around more, and the stitches hurt less especially while standing.

One of the most helpful things about the first few weeks of recovery was the steady support and encouragement I received from Dr. Goldstein and his office. Just about everyday, for two weeks, I would speak to Dr. Goldstein or Melissa about how I was doing. It was great to have them available to answer my questions, calm any anxiety, or just give pep talks- all this in a caring, down to earth manner that made them seem more like family than medical professionals. Three weeks post op was my biggest breakthrough. This is when I was able to start taking a real walk outside everyday and I also resumed driving, running errands and cooking. The morning walks were amazing – I had the biggest smile on my face the whole time- I wanted to shout out to everyone “I have no vestibule people! I’m free”, but I kept that thought to myself. I was just thrilled that my body was healing properly and that I was getting back to my normal routine.

The next several weeks had many milestones. By 4 ½ weeks, I was able to comfortably sit in a chair/ car for long periods, during which time I even went to an all day tennis tournament! By 6 weeks my stitches had dissolved (stitches really itch as they dissolve- not fun, but manageable) and I got into the daily habit of looking at my vulva/ vagina in a mirror just to see how everything was doing. I started touching the skin to see how it felt and slowly inserted the tip of my finger into my vagina, which at this time, was still a bit tender from the surgery. Between 9- 10 weeks post op, I had a follow up appointment with Dr. Goldstein at which point he felt that I was ready to start physical therapy. I started PT the next week, and was lucky to find a great therapist, who despite never having treated a vestibulectomy patient before still had deep knowledge about the pelvic floor muscles. I remember being really nervous before my first appointment because I was unsure about whether it would hurt. When the therapist inserted a finger (gently) I did feel some discomfort, mainly because the tissue was still tender, but to my great surprise, when she took her finger out, the discomfort totally stopped. This was a huge change for me- I had so many physical therapy sessions in the past that ended with flare-ups, or ones where I would need lidocaine beforehand. Now, my therapist could focus on improving the muscles, stretching the opening, and relieving tension, without me suffering afterwards.

About 5 weeks after starting PT, I also began using vaginal dilators at home to further stretch the opening. Since I had already used dilators in the past, this was a familiar routine for me. I started slowly just inserting the tip of a tapered glass dilator, which I gradually put in further and further, eventually switching to a larger size. Though the dilator provided a big stretch (that wasn’t always easy), as soon as I pulled it out, I would feel no pain or burning. Afterwards, I often inserted two fingers into my vagina and could feel firsthand how much the tissues had changed. What used to feel hot and inflamed, now feels soft and calm. It’s not just with dilators and fingers that I notice now much the surgery has helped me. I can now go swimming in chlorinated pools, something that previously would cause inflammation and burning. It’s a small thing, and certainly not an essential part of life, but there’s something about jumping into a big pool in the summer that just makes me so happy! I celebrated by buying a beautiful new bathing suit. I can now also successfully use tampons, which before my surgery would always hurt after I inserted them.

It’s funny because in recent weeks I’ve felt like a born again virgin, waiting for the right time to go all the way. But another side of me, the grown woman with plenty of sexual experience, knew that the first time is usually highly overrated. When I realized that our initial transition to intercourse probably wouldn’t be perfect, it took the pressure off the whole event. Then, yesterday, somewhat spontaneously, we decided to just give it a quick try- to “just put the tip in” and take it from there. I felt calm and tried to let go of any expectations, good and bad. Moving slowly from some foreplay, we inserted one of my dilators to stretch the opening a bit. When the initial tightness released, I took out the dilator and tried to relax. My husband was able to insert the tip of his penis plus a good bit more. Although my vagina felt tight, it was nothing like the pain of vestibulitis. A few minutes later, we stopped, and felt content and grateful for our “first time”. Afterwards, I felt no pain or irritation – I even tested it and inserted a couple fingers into my vagina and felt only calm, happy tissues. A vestibulectomy isn’t exactly a quick fix. Although it’s a short procedure, it’s also an intense one that takes time, patience, and resources for successful recovery. Being on bed rest made me have to rely on other people in a way I never had before, and I experienced pain levels that weren’t easy to get through. But for me, the temporary discomforts and demands of surgery paled in comparison to the daily stress of living with vesibulitis. For me, the decision to have surgery was clear, and it’s been one of the best decisions I’ve ever made. I’m truly grateful that I’ve been given another chance to live a life free of pain and limitations and I plan to enjoy it in every way possible.

2 Comments

alisa

What an inspirational story! I am SO GLAD that you posted this blog for other women to read. I am about to become a patient of Dr. Goldstein myself. My first appointment is scheduled for October 1st. I have already talked with him over the phone… wow. What a kind, down to earth (but extremely knnowledgeable and intelligent) doctor. Similar to your story, I too have the occasional urinary pain that started after UTI’s. It has spread to the vestibular area, and while I have had this pain for four years, and have gone to multiple unhelpful doctors, I only recently found a good specialist who gives me good reason to hope. Ladies, if there are any of you out there who are coping with this condition and haven’t been helped, KEEP SEARCHING!

raninan

It’s been a while since my first post and I wanted to write more about my transition to intercourse with my husband. I’m going to try and be frank about the things that are working and the elements we are still trying to figure out. But I should start by saying that overall, I am in such a better state than I was pre-surgery!

Before my vestibulectomy, my husband and I went through various phases in our sex lives. For the majority of the eight years that I suffered from vestibulitis, we completely abstained from intercourse, but did remain sexually connected in other ways including oral sex, ‘outercourse’, manual stimulation, massage, etc. Then there were some short periods of time where we did have intercourse, and the results were mixed. On a good day, I would have some light burning during and after penetration, but on a bad day, my whole vulvar area would be throbbing, and in terrible pain, sometimes for hours. Other unfortunate side effects of intercourse were the little nicks and cuts I would get on my vestibule- image peeing on a scraped up vestibule! NOT GOOD.

So, overall things are better- much better!

When we initially transitioned to having intercourse, we took things really slowly. I had been working with vaginal dilators on my own for the previous three months, so I knew that on a purely physical level, I could manage having intercourse. However, with any type of chronic suffering, there is a deeply rooted fear response- attempting the very thing that caused me so much pain in the past was scary, but taking it slow helped a great deal. After a little foreplay (for me this usually includes some oral sex), I inserted a tapered dilator to its largest point (1.5″ diameter). Initially, this felt tight, but after a minute or two, the muscles started to loosen up and I could start moving the dilator around- side to side and up and down. A few minutes later, we lubed up and went for it! Our initial plan was just to insert the tip, but we got a little more in that that! This was for me a BIG stretch, I wont lie, but it was manageable and when my husband withdrew after a few minutes of penetration, I had no pain. Yes, I did feel stretched out, but the throbbing pain, the cuts and nicks- I had none of that. Afterwards, my husband was even able to insert one of his fingers in my vagina and stimulate my g-spot! We never would have tried this before my surgery, but now, I feel perfectly comfortable with that type of penetration/ stimulation. In fact, this has helped me have longer, more amazing orgasms, and we joke that the surgery was worth it just for the orgasms alone.

In the weeks that followed, we have been having sex about 3 x a week. We always stick to the same routine of first using the dilator, then having intercourse. We quickly transitioned from just inserting the tip of his penis to getting the whole thing in there. Usually in the beginning, it feels very tight (particularly because my husband is larger at the base of his penis than the tip), but after a few minutes, my muscles loosen up, making it more enjoyable. At times it feels downright great, other times it simply feels neutral, and sometimes it feels a bit awkward. We have tried different positions, but for now, man on top seems to be working best, particularly because I’m still a bit tight. Woman on top has been the worst so far- I feel like my vagina closes up in this position- even though it always looks great in movies! I should note here that my husband is on the large side- some thing that leads to a lot of joking between us! Also, I have always been on the dry side and have to use lube since I don’t seem to produce any myself. Large penis and dry-ish vagina equals a bit more discomfort than average, but I figure in time, this will improve. Plus my husband jokes that the more my muscles loosen, the more I’ll be thankful for his well-endowed parts- we’ll shall see!?

Another aspect of having intercourse is that it’s been just as much of a transition for my husband as for me. One example of this is that he still has fears in his mind that sex will hurt me, especially the longer it goes. He often feels like he has a timer in his head that he hears ticking away. If he feels that he can’t climax within a reasonable amount of time, the timer gets louder and anxiety sets in. Several times, we have had to stop at this point because he loses his erection. Also, because he’s gotten so used to climaxing from oral sex, he says that having intercourse is a very different pathway to orgasm- with oral sex, I can arouse him, but with intercourse, especially with the man on top position, he is more ‘responsible’ for his own arousal, and it can take longer for him to get there. In turn, this makes both of us question how much longer to continue. Sometimes we go for it, especially when the part of me that wants to become pregnant comes forward, but other times, we stop, knowing that we can pick up where we left off a couple days later. I actually think that the ability to stop takes more awareness and courage than the desire to continue, and “finish”. It’s something that I struggle with- the perfectionist in me wants great sex every time, with a fabulous, climax ending, but at this point, that is not happening every time, and I think that that’s ok.

A couple weeks ago, I did have a bump in the road, which caused a lot of stress, but thankfully, I was able to work through it with the help of Dr. G. I developed a flare up of urinary pain that wasn’t from a bacterial infection. I had struggled with these types of flare ups in the past from intercourse, but this was a particularly bad case. Dr. G suggested that it was most likely an inflammation of my urethra, which he said can get ‘clobbered’ during sex and he prescribed me some meds to help with the discomfort- peridium, an analgesic, and macrobid, a low does antibiotic. For the 12 hours or so, this combo didn’t seem to help, but when I replaced the peridium with aleve, the symptoms started to fade away. I guess it makes sense because aleve is an anti-inflammatory. I was grateful to return to normal peeing a few days later, but made some changes in my routine to avoid this from happening again: more regular use of topical estrogen cream, skipping a day or two between having sex, and perhaps most importantly, only peeing when I need to- not before, not after. For me, urinating without the urge (like forcing myself to pee right after sex) usually results in pain- so now I wait for the natural urge. After the flare up, we have had intercourse two times, and it’s really nice to literally get back in the saddle. Because we had to take a couple weeks off, my vagina tightened up a bit, but I am trying to be gentle with myself and patient, after all the whole point of surgery isn’t just to hurry up, have lots of sex, and become instantly pregnant. It’s to set myself up for a lifetime of pleasure!

I will write more often (with shorter posts) on our progress. Stay tuned…

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