Frankenvagina!

Oh my goodness I am so sorry for the delay in writing my Operation recovery entry as I know a few of you have been really eager to know what to expect! I had a bit of a blip with my health, a holiday in France and I applied for and got a new dream job so it’s not all bad news! I am also not going to lie, the operation didn’t completely fix my problems and so I am still bouncing backwards and forwards to various different hospitals and consultants. In the end I guess I decided, rather selfishly, that I would leave the blog alone for a bit so I didn’t dwell on the Vulvodynia and let it ruin my life more than it does. Amazingly though I have had so many people contacting me asking how the operation was and how I am now that I realised that this blog may actually be useful to people and is clearly providing information to someone out there and so I’ve decided to get back at it.

Without further delay, what happened directly after my operation.

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I remember getting gingerly into the car for the short ride home worried that at some point the pain was really going to catch up with me, especially when the meds wore off. I also recall that form the moment I came round from the anesthetic I had more pain on the left hand side. This is important later.

I honestly think the recovery would’ve been so much worse without my SO who was just fab. He had prepared the settee for my arrival by putting towels down and readying pillows, quilts, blanket and my nightie. He had also got pain meds ready on the coffee table and had bought two bags of frozen peas that were ready to go.

He made me slouch on the settee and refused to let me move! He fetched drinks, food, meds and whatever else I wanted. I managed to make a few phonecalls to family and skyped people before the pain started to become more obvious. In fact throughout the recovery the hardest part, other than keeping still, was getting off the settee to go to the toilet as this did trigger quite a bit of pain. Again, my SO was wonderful and helped me up and supported me the whole way. Because I am a greedy sod I also found that my appetite was as strong as normal and that I had no obvious lasting effects from the anesthetic and that the pain was never so bad as to put me off my food.

I can’t remember how long it was before I removed the padding the day of the operation, but it was definitely before I went to bed the first night. I put on a large, old pair of knickers and a normal period pad to manage the bleeding. My SO helped me into bed and I was nervous that I would have a bad night. I actually found that lying down took the pressure off the area and compared with when I had my wisdom teeth removed my night and the pain were fine. I woke up once for more painkillers but otherwise it was uneventful.

Throughout the first week my SO did everything for me so I didn’t have to move too much. We watched lots of films (including a star wars-athon) and I slept on and off when I felt like it.

My mum came to visit after a couple of days and I noticed that I felt incredibly sick and dizzy when I was trying to talk to her. She suggested that it might be the co-codomal so I decided to stop taking it. The dizziness stopped fairly quickly and I found I could manage with just paracetamol, ibruprofen and frozen peas.

The hospital recommended I take shallow baths every couple of days and I had to make sure I kept soap away from the area for a few weeks. My SO helped me with the baths and washed my hair when it became so greasy I couldn’t stand it. The bleeding was generally very light and lasted a little over 2 weeks but was mainly like period spotting. I was terrified to look at the area for quite a while and I will honestly say that when I did it knocked me a little sick. It was purple and bruised with these horrid black stitches. A real Frankenvagina! Maybe I am remembering it worse than it was but I definitely felt like I would never look normal again! I did though so the worry was unwarranted.

From my own personal experience there are there were three main issues I would like to mention for recovering from the Vestibulectomy for anyone who may have the operation:

1)    The first bowel movement (sorry!) Even with drinking juice, eating prunes and taking a mild laxative I was still fairly constipated from the painkillers. This meant that I was terrified to go to the toilet and often ended up painfully straining, worried I would burst a stitch. One such occasion actually lead to….

2)    Blood/clot release. As the swelling had started to subside, I ended up having a scary large bleed, worse than a heavy period. Again my SO was fab and he calmed me down and ran me a bath. Unfortunately when I got in the bath it turned pink with blood quite quickly and I could see I was still bleeding quite heavily. By this time I was really panicking and was imagining emergency operations and hospital visits. Luckily the bleeding did stop after around 10minutes or so however this was easily the scariest part of the whole recovery.

3)    That familiar burning sensation. I found that whilst healing, the burning sensation I had already lived with for over 12 months still appeared to be there. In particular the left hand side, which I mentioned previously, was extremely sensitive and I would often get shooting pains there when I moved awkwardly or sat down wrong. This continued throughout the entire healing process and unfortunately is still there today but that’s for another entry.

I went back to the hospital after 3 weeks and they cut out some of the remaining stitches. By this point I was hardly in any discomfort anymore and was practically back to normal. I even went out with a friend for her birthday and to get me out of the house. After just over 4 weeks I went back to work, with some stitches still in place. A couple of these stitches I ended up getting removed after 6 weeks as they were poking in a bit.

I will go into more detail about what has happened since the operation in my next blog but just incase anyone is wondering I am now finally able to have sex a bit easier. Halleluja! Not going to lie, we are a bit limited due to the area still being a bit sensitive and through me now having a mild, understandable phobia but at least we now have the choice. I am still having issues on the inside, possibly due to inflammation in my muscles but I have managed to wear tampons successfully on a few different occasions. This is again something I never managed before.

Unfortunately the constant burning sensation is still there, as are the shooting pains from the left hand area. Apparently I may have allodynia, general nerve pain, which is supposedly separate from my operation as well as the muscles on the left being swollen and inflamed. This being unrelated to my operation is something I am not convinced about. Subsequently I am still having to live in skirts and find sitting a constant chore. I am not as bad as I was but life is still a bit of a drag. I originally was taking amitryptaline for the pain but found this made me drowsy. I am now taking Lyrica instead which isn’t really solving the problem but at least the side effects are minimal. Lidocaine also helps a bit so I can’t complain too much.

Even though I am not totally fixed and have other ongoing issues I would like to point out that I don’t regret having the operation. The recovery for me was fairly straight forward and I am now able to at least explore a normal sex life as well as not having to worry if I am on a period when I want to go swimming. I still believe that cutting off the area that hurts really isn’t a good cure but it is one of the few options currently available to suffers of VVS and if it gives people even a small % of relief then I guess it’s better than nothing.

I will also add that if you are considering having this operation, please make sure you go into it fully prepared for it to not work 100%. I really wasn’t prepared and that caused me to be quite depressed for a while. Also make sure your consultant has tested you to ensure the Operation will actually help and that they have experience of performing it. There is so much more I could write about my opinions on the various treatments I am trying however I think this post is long enough. If you have any questions about the surgery then get in touch J

Next time….The aftermath and how I try to remain hopeful.

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12 thoughts on “Frankenvagina!

  1. Hi Amy, I think I have provoked. As the majority of the time my vagina only hurts during or after sex. I am in a lot of pain at the moment due to the fact of having sex twice Sunday. The burning has lasted a week now, I am hoping the operation cures me or at least makes my life a little easier as I don’t really know how much more I can take!! I can’t really tell where the pain comes from? It just feels like it’s all around my vagina, is that weird that I can’t tell where the pain is coming from?
    Thanks chelsea x

    • No not at all! That was the problem I had, and still have. When I get a flare I feel like I’m hurting all over and it’s like there’s no easing the pain. After the op i at least knew the left hand side was worse. Being able to have sex twice in a day though is something I could only dream of! It’s probably been 5+ years since I could consider that so at least there is something positive to focus on. Have you also been offered physiotherapy and counselling? Both are very good complimentary treatments that will help you to deal with the pain, especially counselling as sometimes pain causes a tension cycle that can make pain worse. It does get better I promise. It’s just a slow process X

      • I guess so yes! And no, I have not being offered any therapy of counselling. I have tried two sets of antidepressants, lidocaine gel which helps after sex sometimes. I have been given epiderm soap also, which is a load of rubbish. I am hoping the surgery will help me, as my problems only really occur after I have sex, I really am sick off it all now and it is getting way to much for me to handle, I don’t know what I am going to do if this fails x

      • I would definitely ask your doctor for counselling. I wasn’t offered it until I nagged but us girls with this are physiologically not in a good place and we should be getting that assistance. Heck even if I was cured tomorrow I’d probably still suffer vaginismus. Definitely ask about it 🙂 also, acupuncture has really helped me but again this is because I’m in the “I won’t be cured and have to live with it” phase. The op has worked wonders for a lot of women so fingers crossed for you! X

      • What is vaginisum? I’ve never heard of that before… I just can’t get my head around there not really being a cure! I can’t live with this anymore I think the surgery really is my last option, sounds silly but I am just so depressed with it now and I’m only 19!
        Did your gyno think you would be cured?
        Also, recently in the last week when I have been going the toilet I have had a burning feeling when I pee and I’ve never really experienced that before I thought it was a water infection at first but it isn’t… How do you cope when you have a flare up? I work behind a bar so when I’m in pain I just want to curl up in a ball and go home x

      • Vaginismus is when the muscles of the vagina go into spasm often before sex as subconsciously women may ne expecting pain. It is a condition in it’s own right but can occur when you have pain conditions that can trigger the cycle. It’s took me ages to come to terms with not being cured. My gyno was always positive but never gave much away. I remember when I started, I cried to my boyfriend and said “some women suffer for months or years. I can’t cope with that. I won’t make it.” But here I am 3/4years later and its not as bad. I still have days where I want to cry and days when I go home from work early but I’ve found a good balance between wearing skirts all the time, abstaining from sex, baths or ice when sore and meditation. I have an office job too and sometimes I do wonder how I cope but I try not to drive myself crazy thinking about causes and cures. Therr are so many horrible, painful conditions that can’t be cured easily and so I know I’m not alone. The burning sensation when going to the toilet is also fairly typical when on a flare. I get that at least 1 week a month. Again, you just sort of get used to it and eventually it does ease. If you’re problem is mainly sex though then there is a good chance the op could just do the trick. Apparently you can just wake up one day and not suffer again too which would be awesome! we can wish….

      • As a 19 year old girl, talking to someone with the condition who is older gives me so much hope. I really do hope you find a way to get rid of this horrible condition!x

      • Vaginismus is when the muscles of the vagina go into spasm often before sex as subconsciously women may ne expecting pain. It is a condition in it’s own right but can occur when you have pain conditions that can trigger the cycle. It’s took me ages to come to terms with not being cured. My gyno was always positive but never gave much away. I remember when I started, I cried to my boyfriend and said “some women suffer for months or years. I can’t cope with that. I won’t make it.” But here I am 3/4years later and its not as bad. I still have days where I want to cry and days when I go home from work early but I’ve found a good balance between wearing skirts all the time, abstaining from sex, baths or ice when sore and meditation. I have an office job too and sometimes I do wonder how I cope but I try not to drive myself crazy thinking about causes and cures. Therr are so many horrible, painful conditions that can’t be cured easily and so I know I’m not alone. The burning sensation when going to the toilet is also fairly typical when on a flare. I get that at least 1 week a month.

  2. Hi Amy! We spoke not long ago about your operation, I’m just writing to tell you… I had the surgery! With professor Luesley the same as you ☺️ I had a modified fentons (where they widen the vagina to avoid tearing), a vestibulectomy and Botox injections into my pelvic floor muscles (I to suffer with muscle spasms which I didn’t realise)

    My recovery so far has been okay, the pain hasn’t been anything like some women told me I would be experiancing. Just stinging and burning really, is this normal?
    There is also one stitch that is causing me concern, It is the stitch where he has cut down towards my bum to widen my vagina. I feel like it isn’t healing, (I know it’s only been 5 days) but it is the only one which seems to look open? If that makes sense. What would your opinion be on that?

    I hope all is well with you, and you arnt having a rough ride with things. My next appointment with him is in 6 weeks, March 14th he has said after this date I will be able to return to sex, this is exiting yet very very very scary to think about!
    My first bowel movement was also very hard, I had to take stool softener because I was so scared. I haven’t been since hahaha!

    Have you gotten used to the look of your vagina now? As I looked the same day and was traumatised I cried so much.
    Please reply when you get a chance, as I know your very busy
    Thanks chelsea x

    • Hi Chelsea. I’m really pleased your recovery hasn’t been too rough so far. To be honest I only got sore, burning pain when recovering too, the same sort of pain I’ve often dealt with on a daily basis so it wasn’t a big deal for me. But yes bowel movements were horrible!

      I remember mine looked all purple and red and sore – like a frankenvagina! It was horrid! But now it just looks like normal pink skin with a few bumps and a vestibule that ends slightly early. I don’t think it looks bad at all (though I didn’t really pay that much attention before hand!) and my partner also thinks it looks fine. In fact I don’t know how he can go near me sometimes after having seen it post op! I had issues with the stitches near my bottom too. I ended up having to have them removed by a nurse after I’d already returned to work, 6 weeks later, as they just wouldn’t go. I guess they are the thickest ones and the area that moves the most. I wouldn’t have been able to have sex for easily 2 months post op as I was still a little tender.

      How are you feeling now? I really hope the op helps and it leads to lots of pain free days and sex!

      X

      • Ah I’m glad you had the burning pain as well, I thought the surgery may not have worked but in the last 2 days I haven’t felt any of my old symptoms which I am so happy about!
        The stitches what are causing me problems are the modified fenton ones, the cut they make down towards your bum. Are these the ones you had problems with?
        Because mine, the stitches are still there but the wound looks open. I seen my GP but she said it was normal but I was just wondering if you had experienced this.

        I shown my boyfriend today for the first time since I had my op and his face didn’t even change haha, the only difference I can see is obviously at the moment the stitches and bumpy skin, some of the inside lip what has been removed and obviously that open stitch. Which is driving me crazy! But I’m sure will heal.
        Bowel movements still creep me out as everything just feels so tight and horrible.
        But yeah the main question really is the one about the stitch. I rang prof Luesley and he reassured me that he had NEVER in all his professional years had to re stitch a vagina so to stop worrying haha! X

      • Hi amy, so I am now 6 weeks post op. I am feeling okay and the skin he removed is now pain free. Although I do still have some slight uncomfortableness on the top vagina wall but that is mainly when I need to urinate. I have not had sex yet so I don’t know 100% weather I am rid of vulvodynia x

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