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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Vulvodynia – What’s that then?

* Warning – This blog contains icky stuff and lots of feeling sorry for myself! *

What is this life if, full of care,
We have no time to stand and stare
.

Until less than two years ago I had great difficult keeping still. I wanted to be busy all the time. I would quite happily go straight from work to the pub or a café most nights of the week and even started going to the gym. In my free time, when I actually had any, I would play the piano and computer games. Whatever money was left over after paying bills went on alcohol, meals out and fashion; essentially anything I enjoyed doing. If I didn’t have something planned for an evening or, woe betides, a weekend then I would get depressed. I couldn’t stand to be bored. I was going to live it up while I could. Illness was something that only people who were older had and, in any case, what sort of person let’s illnesses stop them from doing things?

Then along came Vulvodynia. Or vulval vestibulitis. I’m not even sure which of the two conditions I actually have. It’s likely both as they are interchangeable and one and the same though with slightly different symptoms. I went to bed one day perfectly healthy, or so I thought, and woke the next day in discomfort. A discomfort I have subsequently felt every day since with no end in sight.

Ok this is where the gross stuff starts. If you feel uncomfortable when people talk about sex or at the mere mention of ladies bits then you may want to stop reading, make a cup of tea and do something else.

For those of you who are still reading I will now attempt to explain some of my symptoms and how Vulvodynia affects me. If you have found this blog by chance then you will likely already know all about how it affects you so I apologise for “teaching you to suck eggs” and all that.

Wikipedia describes the condition as “a chronic pain syndrome that affects the vulvar area and often occurs without an identifiable cause or visible pathology”

It is not known how many women suffer with Vulvodynia however the general figure is around 15%. I would say this was quite a high percentage for something that doctors barely recognize or understand.

Symptoms of Vulvodynia include:
-Burning, stinging, Itching and Rawness of the Vulval area.
-Pain in the vagina during insertion.

Symptoms are often felt whilst sitting, cycling, during sexual intercourse or tampon insertion. The symptoms may be all the time or just once in a while and may or may not be triggered by anything in particular.

Symptoms can occur at the entrance to the vagina, the labia or even the clitoris. There are also many interchangeable conditions that are all linked – Vulvar Vestibulitis, Interstitial Cystitis and Vaginismus to name a few. No one really understands what causes the condition, why it varies from person to person or the best way to treat it. What every woman who suffers with the condition understands is that it can be a nightmare to live with.

Causes may include:
• Nerve injury
• Abnormal response in vulvar cells to an infection or trauma
• Genetic predisposition to inflammation
• Allergies or irritation to chemicals or other substances
• Hormonal changes
• Frequent antibiotic use
• Sensitivity to yeast infections
• History of sexual abuse
• Over treatment for other Vulva conditions

Just the fact that the condition is so variable is in itself part of the frustration of the condition. I have spent hours wracking my brain, attempting to work out what is causing my pain and how to improve it. My Biochemistry degree is not proving all that useful.

My symptoms are mainly: Sore, stinging, burning, raw sensation when I sit down or lean forward from a seated position. Sex is almost impossible without some level of pain and so my sex life is practically none existent. I find I use the toilet a lot more often and have excess discharge that coincides with the pain. My pain comes and goes in flares. Some days I will have no pain and then a flare will start from nowhere and last for weeks. I also get lower back pain, extremely painful periods (with my Vulvodynia pain being at it’s worse at this stage) and muscle pain in the pelvic area.

Sitting is the main trigger of my pain. Long car journeys, playing the piano, spending the whole day at work and then sitting in the pub for a few hours are all hell. Essentially the less time I can spend sat down, the better. I now can’t wait to get home from work to get in the bath and go to bed. Sometimes I spend over 10 hours in bed! This has meant my hobbies and my social life have mainly gone out of the window.

Trousers are now a complete no-no. Tights and leggings aren’t much better and to be honest I am at my most comfortable when I am lounging on the settee completely commando. (I warned you!)

Coming to terms with not being able to wear my jeans anymore was, as silly as it sounds, one of the hardest parts of accepting this condition. I’m a rock chic at heart and I lived in jeans and t-shirts. I didn’t even own a dress! Now that’s practically all I own. Flowery, girly things that, while they look beautiful, I feel they didn’t reflect my personality.

There is also the depression. Dark day’s where I can’t believe my life has changed so dramatically. I always wonder “Why me? Did I do something in a past life that I am being punished for? Did I bring it on myself with something I did?”

The money! £100’s on new clothes and shoes, £500 on getting a private diagnosis when they NHS couldn’t work the condition out (this is a blog entry in itself!) and the £100’s I am yet to spend on medications, treatments and other things to attempt to alleviate the discomfort.

And of course the most frustrating thing of all is the lack of sex. The pain I experience when trying to have sex is horrendous. Plus when it feels like someone is constantly sandpapering or blowtorching your lady parts you don’t really feel all that sexy. “That was wonderful darling. Now excuse me a moment while I cry, rub my bits with ice and limp for a few days!”

These are just my symptoms. Other women suffer far worse than me and sometimes with varied symptoms.

So I go out far less, I have less sex and I wear dresses all the time. My money is spent on pills, potions and lotions and I spend far more time in bed than is probably healthy. However, I also spend more quality time with my fiancé (who is an absolute star by the way. I am very lucky) and I go for gentle walks on a regular basis. My life has slowed down and, you know what, it’s quite enjoyable. Small things like lying out doors with a good book and appreciating nature are all bonuses. I have started to appreciate the small things in life. So I guess that whilst Vulvodynia has taken things from me in return it has given back in the strangest of ways…..

A poor life this if, full of care,
We have no time to stand and stare.

Next time – What is that burning sensation? The day I woke with Vulvodynia.

Blogs are for the self-obsessed

What sort of person has the time to write a blog? And why would anyone bother to read someone else’s self absorbed ramblings??

I am ashamed to say that this was my opinion of blogs and the people who wrote them. That was before I developed Vulvodynia; a relatively unknown health condition that changed my life overnight in some completely unexpected ways. It is a condition that the NHS and the medical profession in general know very little about.

Blogs turned out to be one of the best ways I could find help, guidance and support whilst trying to understand and come to terms with this condition. Those written by women suffering from this same, relatively unknown condition that were also experiencing the same struggle as me proved to be invaluable. It was at this point that I realised that, not only did blogs give people the ability to share their thoughts and connect with people, they are great for spreading knowledge and giving people faith when before it seemed there was little hope. Yes they can be self absorbed however they often contain some really good bits of useful information and can bring people together in a way that previously wasn’t so easy.

Therefore, I too have decided to write a blog and to jump on the bandwagon. I want to give back to those women who unknowingly aided me in the past. I’m hoping also at the same time to offer support and guidance to other people who may also suffer with vulvodynia and will spend endless hours trawling the internet for just a little bit of advice. People who just want to feel they aren’t alone and that someone else understands what they are going through without the embarrassment of having to talk face to face to someone about a rather private problem. It also gives me a chance to flex my writing skills and I’m already realising just how little I know anymore about writing!!

SO the aim (hopefully) of this blog is to describe what life is like living with Vulvodynia, explain how I ended up where I am today and describe some of the treatments I have so far tried to help ease the constant suffering. Even if just one person reads this blog and thinks “you know that sounds like what I am suffering with. I am going to go to my doctor and tell him/her that I think I have vulvodynia” then this blog will have succeeded.

I have chosen the name Tender Trips as I think it sums up how life often feels – one long, tender trip.

Note – I promise this blog is not going to be one almighty moan from me about hard my life is blah blah blah…… I won’t let my life be ruled by Vuvlodynia and so neither will I let it rule my blog. I hope to talk about other things and include the random musings of the slightly odd person that is me! However be forewarned that there will be moaning. It is what I do best afterall!

Ack! That’s the first one done. Scary…

So what sort of person has the time to write a blog? Well that would be me. And why would anyone want to read one? Well…I’ll leave that up to you.