My Journey With Vaginismus

Hi all, I hope you're all grand 💙

In this blog I want to write about the journey which led to my diagnosis and the doctors I spoke to along the way. A heads up that this article will go into a lot of detail about womens health. As this is a topic that is still not spoken about a lot, I want my story to be told for other women to find to know that they have hope and aren't alienated from the rest of the world and woman hood. This blog also includes a lot about my mental health and the struggles I had with it all.

Please note: I am in no way a medical professional and what I speak about is my own journey with my illnesses. If you want more professional information regarding vaginismus/gynaecology pain please visit NHS webpage.

For as long as I can remember, I have always had chronic burning pain when it came to, as I like to call it, "downstairs". I always remember in primary school struggling to sit down and always kneeling in my chair so I wasn't applying pressure to my downstairs. It was a very different time as I couldn't understand and comprehend what was happening to me. The pain over time became worse through secondary school and then started to become unbearable until March 2020 where I was reaching the point I couldn't get out of bed, the pain was unbearable. It's now 2023 and I have just received my diagnosis.

My symptoms are:

• On and off burning vaginal pain

• Tight vulva muscles

• Sometimes pain going to the toilet

• Persistent arousal disorder

• Burning pain when moving (walking, excercise)

• Internal stomach swelling

• Not able to use tampons.

My journey over the last 15 years has definitely been a jumble of experiences and I will try my best to split them up.

Ages 7 - 16 - Various GP visits:

From the age of 7, this was the point I started becoming aware of an uncomfortable pain the was somewhat in the background on my mind. I started fidgeting in my chairs more and everytime I did excercise, and unbearable "tingly" feeling would take over my body - which I learn in the future to be persistent arousal disorder, which is a terrifying thought to experience at such a young age. Over the years I started noticing that it was becoming worse into my secondary school life. At this point I was missing classes due to sitting on the toilet in pain and downing loads of water (I still to this day don't know why drinking loads of water somewhat helped) and it started to become life debilitating as I was exhausted constantly from not being able to sleep due to the pain and my muscles all over my body constantly straining from the pain. This is when I finally opened up to my mum about it and started seeing GP's about the pain between the ages of 12 - 16 and this is where my mental health collapsed from what doctors told me:

• You're going through puberty, you'll grow out of it.

• You're a woman, it's normal.

• Just change your underwear, you're a teen so probably wearing very unlady like underwear which won't help.

• Just get over yourself, you're a woman and it's normal.

And so on... but I was always wondering to myself why my friends weren't experiencing the same stuff as me and, if this is a normal thing, not being spoke about more.

It reached a point that I became so embarrassed about who I was and feeling the furthest from what a woman was that I was struggling to even care about who I was and started hating my body for not doing what it should do.

Towards the last few years of secondary school, I started "experimenting" with guys and girls and this is when I really started to hate myself in all my might. Every experience was so painful and unbearable that I started hating the thought of anyone touching me. I was thinking to myself "why would anyone want someone who's so broken?" "Why would anyone want a body that couldn't please them?". It destroyed me at this point. Luckily, I just threw myself into my school work and just focused on getting through school.

Ages 16 - 18 - starting my engineering apprenticeship and ER visits:

When I started my apprenticeship, it was obviously very male dominated which is all grand, however, I struggled at this point to even speak about my pain and just womanhood in general.

This was then when I started missing weeks worth of college and work due to being in so much pain it pretty much paralysed me. I wasn't able to leave the bed due to the pain throughout my whole body. Over these years was where I was so fortunate to meet my partner who was there to support me throughout it all and still to this day.

He was my first when it came to sex and this is where I said to myself I needed help as I was in agonising pain for a good week aftwards just due to having sex. Something that should bring such pleasure brought me a world of pain and hatred to myself. This is also the time I started going to the ER a few times but was always turned away as they didn't know what was wrong with me. I finally went to a GP and stayed put in a chair until they did something about it. They said that they can book me into the dermatologist as I may have a skin irritation problem on my downstairs.

A year of waiting for the appointment and I was in and out within 5 minutes. They took a quick look at my downstairs and said nothings wrong so that must mean the problem is solved. A few weeks later I got a letter stating all is fine and the problem was resolved.

This is when I started just giving up on myself and just waiting for the days to pass. I just didn't care anymore what happened to me.

Ages 18 - 22 (now) - Private doctors & NHS Pelvic Pain Clinic:

After getting glandular fever in March 2020 and my body deteriorating, this is when the pain became constant and was there 24/7. My theory is that when the glandular fever hit my body, the bit of strength my vulva muscles had, just finally collapsed so the pain was just like "Hi, I'm gonna stick around now.". I went to the ER a few more times after this which once again were dead ends.

I then went back to my GP and put my foot down. I genuinely felt like I was on my last legs of life, I was that destroyed inside and out. Something had to change! So in September 2020 the GP started the process of referring me to the NHS pelvic pain clinic... I didn't get my first face to face appointment till March 2023.

In these 3 years I did go see a private downstairs physio who thought me how to use dilators and do physio exercises. However, I was finding that this was doing nothing for me as I was becoming so frustrated with myself and everytime I used the dilators they caused agonising pain. And also the persistent arousal disorder was so unbearable that the dilators were useless. This was then when they recommended me to get a spine and pelvic MRI which I did luckily get done the the NHS. They were looking out to see if I had any trapped or damaged nerves or had any internal growths. These were all dead ends, which os thankfully brillaint news but at the time I was so desperate to find the problem that I was hoping they's show sometime wrong.

After this, I then went to see a private gynaecologist in London (which cost an arm and a leg) and they checked me out for endometriosis and any other diagnosis as such. All were once again dead ends. However, the greatest part about these visits was that this doctor was the first Hi all, I hope you're all grand 💙

In this blog I want to write about the journey which led to my diagnosis and the doctors I spoke to along the way. A heads up that this article will go into a lot of detail about womens health. As this is a topic that is still not spoken about a lot, I want my story to be told for other women to know that they have hope and aren't alienated from the rest of the world and womanhood. This blog also includes a lot about my mental health and the struggles I had with it all.

Please note: I am in no way a medical professional and what I speak about is my own journey with my illnesses. If you want more professional information regarding Vaginismus/gynaecology pain please visit NHS webpage.

For as long as I can remember, I have always had chronic burning pain when it came to, as I like to call it, "downstairs". I always remember in primary school struggling to sit down and always kneeling in my chair so I wasn't applying pressure to my downstairs. It was a very difficult time as I couldn't understand and comprehend what was happening to me. The pain over time became worse through secondary school and then started to become unbearable up to March 2020 where I reached the point I couldn't get out of bed, the pain was so unbearable. It's now 2023 and I have just received my diagnosis.

My symptoms are:

On and off burning vaginal pain

Tight vulva muscles

Sometimes pain going to the toilet

Persistent arousal disorder

Burning pain when moving (walking, excercise)

Internal stomach swelling

Not able to use tampons.

My journey over the last 15 years has definitely been a jumble of experiences and I will try my best to split them up.

Ages 7 - 16 - Various GP visits:

At the age of 7, this was the point I started becoming aware of an uncomfortable pain the was somewhat in the background on my mind. I started fidgeting in my chairs more and everytime I did excercise, an unbearable "tingly" feeling would take over my body - which I later learnt to be persistent arousal disorder, which is a terrifying thought to experience at such a young age. Over the years I started noticing that it was becoming worse into my secondary school life. At this point I was missing classes due to sitting on the toilet in pain and downing loads of water (I still to this day don't know why drinking loads of water somewhat helped) and it started to become life debilitating as I was exhausted constantly from not being able to sleep due to the pain and my muscles all over my body constantly straining from the pain. This is when I finally opened up to my mum about it. Between the ages of 12 - 16 I started seeing GP's about the pain and this is where my mental health collapsed from what doctors told me:

You're going through puberty, you'll grow out of if.

You're a woman, it's normal.

Just change your underwear, you're a teen so probably wearing very unlady like underwear which won't help.

Just get over yourself, you're a woman and it's normal.

And so on... but I was always wondering to myself why my friends weren't experiencing the same stuff as me and, if this is a normal thing, why was it not being spoken about more?

It reached a point that I became so embarrassed about who I was and feeling the furthest from what a woman was that I was struggling to even care about who I was and started hating my body for not doing what it should do.

Towards the last few years of secondary school, I started "experimenting" with guys and girls and this is when I really started to hate myself with all my might. Every experience was so painful and unbearable that I started hating the thought of anyone touching me. I was thinking to myself "why would anyone want someone who's so broken?" "Why would anyone want a body that couldn't please them?". It destroyed me at this point. Luckily, I just threw myself into my school work and focused on getting through school.

Ages 16 - 18 - starting my engineering apprenticeship and ER visits:

When I started my apprenticeship, it was a very male dominated environment which is all grand, however, I struggled at this point to even speak about my pain and just womanhood in general.

This was then when I started missing weeks worth of college and work due to being in so much pain - it pretty much paralysed me. I wasn't able to leave the bed due to the pain throughout my whole body. Over these years I was so fortunate to meet my partner who was there to support me throughout it all and still is to this day.

He was my first when it came to sex and this is where I said to myself I needed help as I was in agonising pain for a good week aftwards just due to having sex. Something that should bring such pleasure brought me a world of pain and hatred to myself. This is also the time I started going to the ER a few times but was always turned away as they didn't know what was wrong with me. I finally went to a GP and stayed put in a chair until they did something about it. They said that they could book me into a Dermatologist appointment as I may have a skin irritation problem on my downstairs.

A year of waiting for the appointment and I was in and out within 5 minutes. They took a quick look at my downstairs and said nothings wrong so that must mean the problem is solved. A few weeks later I got a letter stating all is fine and the problem was resolved.

This is when I started just giving up on myself and just waiting for the days to pass. I just didn't care anymore what happened to me.

Ages 18 - 22 (now) - Private doctors & NHS Pelvic Pain Clinic:

After getting Glandular Fever in March 2020 and my body deteriorating, this is when the pain became constant and was there 24/7. My theory is that when the Glandular Fever hit my body, the bit of strength my vulva muscles had, just finally collapsed so the pain was just like "Hi, I'm gonna stick around now.". I went to the ER a few more times after this which once again were dead ends.

I then went back to my GP and put my foot down. I genuinely felt like I was on my last legs of life, I was that destroyed inside and out. Something had to change! So in September 2020 the GP started the process of referring me to the NHS pelvic pain clinic... I didn't get my first face to face appointment till March 2023.

In these 3 years I did go see a private downstairs physio who thought me how to use dilators and do physio exercises. However, I was finding that this was doing nothing for me and I was becoming so frustrated with myself. Everytime I used the dilators they caused agonising pain. Also the persistent arousal disorder was so unbearable that the dilators were useless. This was then when they recommended I get a spine and pelvic MRI which I luckily did get done through the NHS. They were looking to see if I had any trapped or damaged nerves or had any internal growths. These were all dead ends, which was thankfully brillaint news but at the time I was so desperate to find the problem that I was hoping they'd show something wrong.

After this, I then went to see a private Gynaecologist in London (which cost an arm and a leg) and they checked me out for Endometriosis and any other diagnosis as such. All were once again dead ends. However, the greatest part about these visits was that this doctor was the first doctor to fully clarify that there was something actually wrong and this was not normal.

In February 2022, I finally got into the NHS pelvic pain service but only for phone calls where I spoke to a nurse who wanted me to try some medications to try and dull the pain.

Please note - the experiences below are my reactions to the meds. These vary from person to person and do help a lot of people. Unfortunately my body just can't handle medication.

I was first put on Amitriptyline for a few months and the idea was to start with 1 tablet and then every month start adding one more until I got to around 6/7 tablets. Unfortunately when I started taking 2 tablets, my body started reacting to the medication. My heart rate (which is already very high due to PoTS) sky-rocketed and I become so jumpy and on edge constantly. I was also really struggling to get up in the mornings. My head felt like a brick. After trying for 3 months I went down to just the one tablet which I am still on. I find jt helps relax my nerves a bit and helps me sleep.

In April 2023 (after my first face to face appointment), I started Duloxetine for 3 weeks.

I was on the smallest dose and it destroyed me mentally and physically. I was sleeping nearly 15 hours a day, was eating so much crap food and was so empty. I felt like a shell and felt so depressed. I was just a zombie. After ringing my GP into the second week, they said for me to keep trying as it can take up to 3 months for the medication to settle. Another week in, I couldn't take it anymore. So I stopped and went back onto 1 tablet of Amitriptyline a night.

May 2023 - Good news!:

I had my first proper face to face appointment with the NHS pain pelvic clinic in March 2023. This was actually quite a great experience. I had five

clinicians speaking to me at once - a Physio, a Psychologist, a Dermatologist and two Nurses. They spoke to me about my problems and checked my downstairs. What was concluded from that appointment was that I had no dermatology problems, I would try the Duloxetine, have a psychology appointment and have regular physio appointments. And also to try Instillagel... this has been my life saviour!! This glorious stuff!

So we know how the medication went and I had my psychology appointment which concluded that my pain wasn't related to my mental state ! I then started using the Instillagel and going to phsyio appointments which now lets me live a somewhat normal life! It's not perfect but I'm a lot more pain free than I was even 5 months ago.

Overall my journey has been an incredibly rocky one and has had mainly downs but finally an up! I want to write a seperate blog around my success with using Instillagel and go into details of why it works for me.

With a problem so complex as Vaginismus, it can be so difficult to find a recurring cure that works for everyone. Instillagel is no means a cure for me but it has definitely helped a lot and I want to make sure that people are aware of it. It may not help everyone, but at least it's something else people can try and see for themselves.

I hope at least that this blog can help shorten your journey or at least help you understand the thought process I had and how I came to this diagnosis.

If you have any questions at all please feel free to contact me. I'm always happy to help in anyway or even just have a natter about it all.

Thanks for the read! Till next time...