This is for Librarian who asked for a Dr. recommendation in SLC. I know we aren't allowed to give out recommenations on the forum but if you message me either through this site through my profile or by visiting my blog: myvestibulectomyblog.blogspot.com/ (if the moderator allows it to appear) I can send you the info on my doctor who I think is really great.
Hi Everyone! After some thinking I decided I should join this forum. I wish I had months ago so I could've ask you all for some advice. I've had localized PVD (Provoked Vestibulodynia) since I was about 15 years old (I'm almost 20 now). After many different doctors and unsuccessful treatments I decided to go through with the vestibulectomy. I had it done on July 6th. I was so scared to get this done. The only surgery I had to compare it to was wisdom teeth removal. Anyway, Its been about 4 weeks post op, and I think I'm doing well. I've been laying down mostly and watching tv. From what I've read on these forums, most women suggest laying down as much as possible for best results. After the first week my Dr. said I could go down stairs, so I did everyday for a week. Wasn't the best idea. I started to have an increase in pain from too much walking. After that I decided to stay upstairs in my room for an entire week and It did wonders for me! I feel almost completely normal again! I still have a little over 2 weeks till full recovery and 3 weeks till my post op appointment. I can't wait to be up and running again. Being confined to your house for 6 weeks isn't so much fun, but I'm really hoping this was all worth it.
I did have a question to ask though. I'm at about 4 weeks post op now and was wondering if it was normal to be dry "down there"? I've had problems with dryness on the area between the anus and the vagina before (I believe it's called the perineum). I haven't had a problem for sometime now and since I've had the surgery I'm afraid to put any prescribed creams I have on it. I was wondering if anyone had any advice on what I should do. Thanks!
Hello Everyone! Haven't gotten any replies on here yet. It's been a few weeks since I've seen any activity on here, but I'm hoping that means everyone is feeling well enough to get out of the house and enjoy their summer. I just wanted to give a quick update on my vestibulectomy recovery. I went in for my 6 weeks post op appointment yesterday and I'm happy to inform no pain! I couldn't even believe it! I was so nervous about getting the q-tip test, but my doctor put it on all of my once painful areas and nothing. No pain what so ever. I still have pain where one of the incisions were made, but my doctor said that is normal and should go away after using dilators. So far the surgery seems to have been a success and I'm so so grateful. I'd really love to hear back from you all and give advice to anyone I can.
P.S: I'd really like to thank all of the amazingly strong women who post such personal parts of their life on here. You all have given such great advice! All of you were a big part of my decision to get this done. So again thank you!
Hi everyone! Thought I'd give an update on my situation. I had a partial vestibulectomy on July 6. Unfortunately, my recovery has not been as fast or easy as some people's.
I came down with a yeast infection around the 1.5 week post-surgery mark. I've been taking diflucan once a week as I've had a problem with yeast; I was discouraged. My dr was out of town so I had to deal with it for about 1.5 weeks before I could see her. I took probiotics and garlic pills, with minimal effect. I still used the squirt bottle to rinse after using the bathroom.
I had gone back to work after 2 weeks off and was in pretty much constant pain, though not as strong as before. I sat on a beach towel in the car and at my desk and walked slowly; sometimes it looked ilke I had a limp. I suddenly sympathized with people who walk very slowly in supermarkets, etc.
When I went to the dr for a follow-up (3 weeks after surgery), she said I was healing "beautifully" and gave me a yeast infection treatment (something starting with a T). I had my period after seeing her and had to use pads, which was just awful--dealing with all the blood (so used to tampons, even though they'd give me discomfort) and they irritated the outside of my vulva. After my period, I used the yeast treatment, which seemed to help some but not completely. Discouraged, again.
I've been back to the doctor once since then. I'm still having daily pain. It feels like "healing" pain, but I can't be sure. My dr seemed surprised when I said that it hurts more than it did before the surgery. It's hard to explain, but it hurts more during normal activities--walking, sitting, etc.--than before, where it would be fine as long as I didn't touch it. I still can't exercise or exert myself too much (walking, cleaning, carrying heavy things, certain positions) without my body reminding me not to do that. This is pain that didn't exist before.
I've been to an allergist to exclude that. I didn't have an allergy test, but we talked about reactions I've had and he didn't think they were allergic reactions--only contact irritation. I do use fragrance-free laundry detergent and avoid soap, etc. I have some random itch/hurt pain on the upper part of my vulva, toward the clitoris. Claritin seemed to help; he told me to take Zyrtec, which is better for overall body itchiness (antihistimine). He seems to think I have very sensitive skin.
My gyno gave me a prescription for boric acid vaginal suppositories (compounding pharmacy) for the yeast and suggested a different probiotic (Florastor), as well as physical therapy, which I start tomorrow. Will keep you updated!
Congrats to everyone who has had an easy recovery and painless healing. As you can see, this is not always the case, and I think it's easy for someone in my position to feel like you're the only one who did not have a flawless recovery after a vestibulectomy. I'm still trying, though! Hopefully physical therapy and boric acid will help!
Thanks! It is tough to keep that in mind, but I do know it takes time and everyone's body heals differently.
I went to the physical therapist this morning for the first time and got some interesting news. It turns out my right hip bone is rotated forward, which twists the muscles in my pelvic floor. I also did biofeedback therapy, which showed that I have quite a bit of tension in my muscles. We are working on doing exercises and stretches to align my hip properly, reteach myself how to relax my muscles, and soften/alleviate trigger points. Because I've had the pain so long (10+ years), it will take a while to fix.
I'm relieved to have something physical to point to as a source of pain. Although I know there are a lot of factors involved, I can't help but think this is one that might actually make a difference in fixing. I am a little bummed it took so long to figure out (no doctor had recommended physical therapy before) but that is in the past and not worth thinking about.
My physical therapist is out for a couple of weeks but I start my real therapy after she returns. In the meantime, I'm doing stretches she gave me and working on diaphragmatic breathing and relaxation techniques.
I'm hoping this is the final piece of the puzzle. If you haven't been to a physical therapist, I recommend going. This alignment issue was not brought up with any doctor I had seen before. My gyno had discussed pelvic floor tension as a possibility, which I now know I have, but without the physical therapist, I wouldn't have realized just how tense I am. I had read about reverse kegels and been doing them--on the monitor, it showed that when I thought I was relaxed, I'm actually still tense. I have a lot of work to do! At least there is this work to do, though; before, all I got were shrugs all around. I'm thankful for a physical therapist with a specialty in female pelvic floor therapy.
Last Edit: 9 months, 3 weeks ago by andnobodydied.
Sounds like your physical therapist is on target, and I am glad that you have started this process. I believe that all patients with any type of vaginal pain should be evaluated by a skilled pelvic floor physical therapist and/or a highly trained gynecologist/urologist that does a thorough evaluation of the pelvic floor, bc probably over 75% of the time that a woman has vaginal pain, she also has pelvic floor tension myalgia or pelvic floor dysfunction. Many associations: american physical therapy association (apta/womenshealth.com), International Pelvic Pain society (pelvicpain.org), ISSWSH.org and NOW: the Alliance for Pelvic Pain (www.allianceforpelvicpain.com) are trying to spread the word to practitioners and patients/clients. In April 2013 there will be an educational retreat on female pelvic pain. Also, my book, Heal Pelvic Pain (healpelvicpain.org), is a good resource to have at home and to refer to for stretches, relaxation techniques and massage techniques. It will take time and persistance and the right treatment, and you will get better. Amy
I agree, I wish I had known more about the muscular components and how they affected my nerves/pain prior to having surgery. Releasing trigger points is so important. And getting that pelvic floor to relax and retraining the pelvic muscles is often key in this sort of problem. Any person with chronic pelvic pain will likely have these muscle tensing patterns that contribute to their problem. I also had a torqued side to my pelvis which gave me a functionally short leg. This was caused by tense muscles I believe, and further perpetuated a problematic pelvic floor which pressed down on my nerves.
The pain I had prior to my modified vestibulectomy was external. That pain is now gone. Initially, after surgery I had new external pain, between the clitoris and the urethra. I had two ganglion impar nerve blocks since then. They helped some, and eventually that pain went away, but it took about 2 years in my case. I was told by my doctor it may have been the sympathetic nervous system causing that, as it hadn't 'turned off' after the vestibulectomy surgery.
The new pain I live with that happened directly after the vestibulectomy is a very deep pain. I have since been diagnosed with pudendal neuralgia. It is unknown whether or not I had this prior to the vestibulectomy. I know I didn't feel this way prior to surgery. My whole life has been affected by it. Things like sitting, standing in place, lifting, stairs are all things I avoid now. While I am not great, this new pain is better than it was nearly 3 years ago when the new pain presented itself right after the modified vestibulectomy.
I find it interesting to hear of several people whom have had similar experiences to mine. Its too bad there isn't a significant amount of research or understanding on the matter.
I am waiting for a court hearing for SSDI to determine if I am eligible for benefits. It has been a long process. I wish I had filed sooner. I kept hoping I would get my life back to normal, but have come to accept my new 'normal' at this point.
I have just had to manage with lifestyle changes. I no longer take daily medication as I have been through an assortment of medications and have yet to find one that helps. I take vicodin (pain reliever) and valium (a muscle relaxant which is very effective) for bad flare ups. Physical therapy is so helpful in my case. I can no longer afford to go (I really wish I could I think I would have more improvement), but I do several aspects at home and am able to make do.
I had a series of pudendal nerve blocks, and pulsed radiofrequency nerve ablation done. They helped me a lot.
Yoga has helped me significantly, although its been a trial and error process as to what I can and should not do. Also, learning how to do internal stretching has helped. A hot bath or an ice pack are sometimes helpful. As well as aleve or ibuprofen to reduce inflammation, and antihistamines can help with reducing inflammation in addition.
Avoiding sitting, driving and being in a car, lifting, stairs, etc. is also very helpful in my case.
Being chronically ill like this has been a very humbling experience. While it has been horrible to be in pain, it has given me the time to slow down. It has helped me to appreciate other people, and figure out what my values really are. As strange as it sounds, I appreciate life more in many ways.
Just wanted to give another update. It's been two weeks since my post op visit and I'm still feeling pretty good. I'm back to wearing my skinny jeans! I'm so happy that I can finally wear them more comfortably! After my post op appointment my surgeon had given me a set of dilators to use. He said to use them every night for up to 10 minutes for the next 3 months. After that he said he'll let me know if I should start pelvic floor therapy. The thought of using dilators was kind of scary to me, only because I've never been able to have anything bigger than my finger in there. I started using them the following day starting with the smallest one for 3 minutes and the next size up for 7 minutes (doctors orders). The smallest size didn't hurt at all, but then when I went to the next size up it hurt a little. Not really a pain, but pressure feeling. Just uncomfortable. Ever since then the area where my hymen used to be hurts, like the old awful pain I used to have. I guess it hurts from all the new stretching ?
I'm just afraid that the pain I'm feeling won't go away and once the time comes to have sex It's not going to be enjoyable. Maybe I'm jumping the gun here. I know the healing process takes time and I shouldn't think this way, but I can't help it. I'm sure you all can understand my thought process on all of this. After being in pain for so long it's hard to imagine what life is like with out it. I still hesitate bending over and sitting in certain positions because I think it's going to hurt. I don't have the same pain as I used to have, but the dilators are still a little painful. If any of you could let me know your experiences with dilators I'd really appreciate it. Is it supposed to hurt for a while? Does the pain subside?
I am now almost 6 months post-op and while I can say the pain is not nearly half as bad as before the surgery I still do have some. I will give an update - my doctor did not suggest the use of dilators, he just told me to use a lot of lube during intercourse. Well, I have barely used any lube and the only pain I feel really is on my left side. I still have some slight burning and I am going back to the dr. on Monday because he believes he may have missed a spot since he didn't do a full vestibulectomy and only did a partial, therefore, in the upper left part of the vestibule there is a tender area.
The only time I can say intercourse has been so painful for me I had to stop was this past weekend when it was the day before my period. I seem to notice that the day before my period and days after burning in certain areas increases and I feel more sore. This is something else I have discussed with my doctor and he seems to think this could be linked to hormones but I have no idea how that would ever become resolved. Has anyone else noticed this pattern?
I think that because of this surgery, everything is so tight that long term stretching is the only thing that will help diminish that initial pain. It takes a while to heal. I will say that intercourse does still hurt upon entry but after that it's fine, so I definitely think it's something to do with the stretching. I'm curious to see if I'm a candidate for PT even though my dr. seems to think I don't need it.
Best wishes for all and try to keep a positive attitude through the recovery process,
I think it is sad how most doctors don't understand the relation of nerve pain and muscle issues when it comes to pelvic pain. It seems very unusual to me though that a doctor would be willing to do that sort of surgery and not think that a patient should go for physical therapy. Surgery always causes some amount of scar tissue and that can not only be painful but cause tissue restriction. For any sort of surgery, I do think surgeons overlook treating scar tissue. A doctor has a legal obligation to be knowledgeable in regards to whatever surgery they perform. Physical therapy is so basic when it comes to pelvic pain. It should be done extensively prior to surgery to ensure the problem isn't resolved that way first. And it should be done after surgery because there are likely muscle tensing patterns from before the surgery and after the surgery in response to pain. It is called a guarding response.
Thank you Ms. Cindy! That was an excellent post. We are all working very hard at trying to spread the word. The IPPS (International Pelvic pain society), ISSWSH (Internatioanl Society for Women's Sexual Health), ISSVD (International Society for the Study of Vulvovaginal Disorders), the APTA (American Physical Therapy Assoc Women's Health) and many more are all non for profits that are trying to spread the word and share all the education and knowledge that is currently out there. They are slowly catching on to how IMPORTANT physical therapy is to evaluate and treat any type of pelvic pain, bladder, bowel or sexual dysfunction. Also, I am now a part of a new Organization: the Alliance For Pelvic Pain (www.allianceforpelvicpain.com) that is an educational retreat for sufferers of chronic pelvic pain. It is a weekend retreat in April 2013. Please check it out and come attend!
I have to agree with what others have said about the importance of physical therapy. Although I KNOW that I needed to have surgery, I do wish I had had the experience of going to a pelvic floor physical therapist prior to surgery.
My update: I had my surgery a little less than a year ago. I was able to have pain-free sex 10 months after surgery. I was feeling super discouraged about my situation when I read that some people were "cured" after 4 months or even 6. So I just wanted to share my experience so others can not feel too depressed if it is taking them longer. Remember everyone heals at a different pace. Don't push yourself before you're ready!
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