My body has plotted an uprising against me

So it's taken me far too long to write a recent post.
My pain has been going up and up and lasting longer. Along with it my brain fog has been horrific, finding it difficult to concentrate is an understatement.
Then there's the endless fertility appointments and tests I've been having.
I'm so grateful to have such lovely nurses keeping an eye on me.
I have a cyst in my right ovary yet again, causing me a ridiculous amount of pain.
It feels like my ovaries are stuck in awkward positions again. It feels like a sickening pulling feeling whenever I move.
Last month I had an ultrasound to check my follicles and it showed the cyst. Its not the biggest I've had but its not great. I ended up going to the doctors for an emergency appointment the next day as I was worried it may be an appendicitis instead as I've had a grumbling appendicitis before. That is the only time my pain around that area has matched that, during ovulation.
Before even though my pain was constant it was always worse just before and during my period.
My pain being more intense during ovulation is new and feels different to my PMS pain.
I'm currently only taking 900mg of aspirin for pain relief which barely does anything. But due to fertility treatment and my low ovarian count. I've tried to keep my body as clean and healthy as possible.

My ovaries currently feel fit to burst.

Natasha. X

Things I find helpful during a flare up

During a flare up, I get the most awful cramps and I really try to avoid taking pain relief if I can.

One of the best things I can do to help ease the pain is have a hot bath, I usually put Magnesium Epsom salts in.

 It feels like every muscle in my body just relaxes.

 I usually order a big bag from Amazon as it’s recommended to put 2 cups in, so I can go through it quickly.

I also love to put a few drops of Fortifying Green Bath potion in, it smells amazing and reminds me of Christmas.

 When I get in my body gets this cool tingling sensation and I just feel so relaxed.

https://moa.co.uk/collections/shop/products/bath-oil

I also find myself attached to a hot water bottle 24/7 which means I have this weird mottled heat rash across my back.

I find a hot water bottle is better for targeting certain smaller areas.

I take Spatone Liquid Iron sachets in apple flavour and again I just order them from Amazon. If I take one daily I do notice my cramps are not as bad. Iron is proven to help fatigue, cramping, bloating and mood swings.

  

Chocolate, who doesn’t love it.

 I crave a lot of chocolate when I’m having a hormonal flux. So, if I nibble on some dark chocolate at least 70% cocoa, I find myself more relaxed and my mood boosted. Due to when we eat chocolate our bodies send off little signals telling us to release certain chemicals. Some of those being endorphins our bodies own natural pain killers, serotonin which boosts our mood and dopamine which gives us the sense of well-being.

Please feel free to message me with any questions you might have.

Endo Education & Project Patchwork

I previously wrote a post on Endo education an Instagram account run by Wendy England.

https://www.instagram.com/endoeducation/

It’s an account created to support and educate women with Endometriosis to raise awareness and let women share their own stories.It’s a safe place for women to help each other and give advice to one another.

I love this account it genuinely makes me feel better about myself, I often have days were I feel lazy and pretty rubbish about myself.

Reading motivational posts and other women’s posts make you feel like you’re not alone. I love reading other women’s tips on how they deal with certain things. All the women are so supportive and friendly. I finally feel like someone understands what I’m going through, they can genuinely sympathise.

Project patchwork is a new site Wendy has created it is for women with various hidden conditions. Again, it was created as a safe space for women dealing with chronic illness. If you are suffering from a hidden condition and just need someone to relate to then you really should give them a follow.

Wendy is currently using kickstart to raise money so that she can make project patchwork her full time focus and cover running costs of the site.

I feel this is another brilliant platform to help women feel like their not alone and to gain information they might not know about.

http://theprojectpatchwork.com/

https://www.kickstarter.com/projects/wendyengland/project-patchwork-every-scar-tells-a-story

https://www.instagram.com/theprojectpatchwork/

Also if you would like to give the incredible lady herself a follow she posts a lot on her personal account too.

https://www.instagram.com/iamwendyengland/

Endo and Diet

Obviously, every woman suffers differently with their Endo as with everything our bodies react differently. What works for one might not work for another, although excision surgery is the gold standard for treating endometriosis at present. 

Once removed there’s no telling how long you will go without experiencing symptoms again. I’ve read various women’s experiences were they’ve barely been bothered by it for years and others who have immediate symptoms. 

I’ve read a lot of woman preaching that the Endo (anti- inflammatory) diet is key to staying Endo free. Now I’m not disputing that for them it works as I do believe we all have certain things that work best for us. 

But for me personally I tried a year Gluten and Wheat free, before I was properly diagnosed as they thought it was Coeliac at the time.

 I mainly ate Meat, Veg and Potatoes which for me isn’t a huge problem, as I’m a big meat eater anyway. I know red meat is considered to be a no-no, so you could argue that of course it wouldn’t have helped. But I’m rather fussy in that I really don’t like salads, I’ve tried different ones and I just can’t find one I like or even pretend to like. Also Veg I eat a certain few but not a lot as again I just don’t have a taste for them. Fish is meant to be so good for you but the only time you’ll ever find me eat it is fish fingers. I also didn’t touch a lot of dairy during this time either. I did have times where I ate more chicken than red meat and again there wasn’t any difference. The only thing that changed with being on a Wheat and Gluten free diet is I was a whole lot grumpier. I love bread! And I’m not one of those people that feels it affects them.

 I try to cook as much as possible from scratch, I cook what I consider to be good home cooked meals.For me I enjoy food too much, I eat what I want but my portion size isn't that big. 

For some changing your diet might be the answer but don’t feel bad if it doesn’t. 

My main point is try different things and do what works best for you. 

New Year’s Eve Flare-Up

My latest flare up decided to rear its ugly head on New Year’s Eve.

I woke up with stabbing pains and spotting, the pain was nauseating.

I thought brilliant what a way to bring in the new year.

The pain always tends to ease off through the middle of the day and then picks up again in the evening. It’s like my body knows when I’m trying to relax and go to bed and decides it has other ideas.

Thankfully Martin and I didn’t have solid plans for New years and he wasn’t really in the mood to do anything. I was so pleased when he said this as by the evening my pain had upped its game. We decided Chinese take away and films would be how we would be spending our night. The pain was so bad I had taken pain medication and thankfully it seemed to do the trick, but it also made me so tired. I started to drop off at 10pm on the sofa and then about 11pm I had a resurgence of energy. I was wide awake till 2am and by then the medication had worn off. So, the pain was back, and I was struggling to get into a comfortable position and sleep.

I knew waking up I would still have the pain as typically a flare up will last minimum a week.

Over the next few weeks the pain would vary throughout the day, starting from when I wake up and easing off through the morning and early afternoon. To reappearing again in the late afternoon and kicking it up a notch in the evening.

I try not to take medication unless I have to, so you’ll usually find me attached to a hot water bottle. I reserve pain relief until the evening when I really need it as the pain tends to stop me from sleeping.

That’s not to say I don’t feel pain during the day too, it’s just that pain is always there. It’s a dull achy pain with the occasional stabbing pain in one of my ovaries. My hips and legs feel heavy and sometimes throb.

Were as my evening pain being more like my insides are burning with sharp shooting pain. With one of my ovaries usually the left feeling like its about to explode. I am prone to cysts in my left ovary and have had them burst before, so I'm very wary of another bursting. The pains usually go hand in hand with and overwhelming urge to be sick, thankfully I’m not always physically sick.

Unfortunately, I’ve spent all of January having a flare up and it has continued into February. My left ovary has been giving me more trouble than usual, my doctor suggested and internal exam just to be sure.

I'm hoping this flare up will die down soon.

Endometriosis and Infertility

I was 23 when I found out I had endometriosis and that was the first time anyone mentioned the possibility of infertility to me. By the time I had my excision surgery I had not long turned 24, afterwards I was told the best time to try for a baby was the next 6 months. It was only 4 months after, I had my follow up with the specialist and she told me even with having had the surgery being that it was so advanced it wasn’t very likely that I’d have gotten pregnant naturally anyway. I could not believe it, I was only 24 and being told I would need help to have children. I felt like a failure my body wouldn’t do the one thing it was made to do. I had obviously heard about infertility before but always thought of women in there late 30s not someone in their mid-twenties. Everyone else my age had no problem having children, so why is it that the one thing I’d always wanted seemed so hard for me. I was referred to the infertility clinic rather quickly, my husband and I had our initial consult. We both had to have a number of blood tests and I had to have a scan to check the number of follicles I have left. It showed I have a lot less follicles than I should for a woman of my age, which is concerning because we as women cannot produce more. I was put on the mini pill to stop my menstrual cycle which was also in hope to prevent or lessen further pain. IVF was suggested as the best option, in a woman under 35 the success rate is 32% but given my condition I was told it would lower the success rate further. But it may have more chance of working if we used donor eggs. That thought terrified me, that I would go through so much to even attempt getting pregnant and then the chances of it taking were very slim. I not only felt sad for myself but sad that I may never give my husband our own child. It’s very difficult to come to terms with and to think if you do have a child either using someone else’s eggs or adopting. You would never look at that child and see a mini version of the two of you. Or the possibility that I could be robbed of carrying a child and experiencing that part of the journey and feeling a bond only created through sharing 9 months as one. Infertility is a long and hard road that seems like its never going to end. It is not something I would have ever imagined having to worry about at the age of 25. 

Infertility in young people is more common than people realise.

In order to start treatment I have to loose a minimum of 8 lbs to bring my BMI down to NHS guidelines.

A site I am finding very helpful is

ivfbabble.com

They are not only raising awareness about infertility but allowing women going through the same thing to connect and share their stories.

They have created this cute little pin to raise awareness and show support for infertility with profits being donated to Fertility Network.

So, what is Endometriosis?

Endometriosis is a condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body.

It can appear in various places, including the ovaries, Fallopian tubes, inside the tummy, and in or around the bladder or bowel.

Every month a woman’s body goes through hormonal changes. Hormones are released which cause the lining of the womb to thicken in preparation for a fertilised egg.  If pregnancy doesn’t occur, the lining breaks down, this is then released from the body as a woman’s period.

In endometriosis, cells like the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.

The symptoms of endometriosis can vary. Some women are badly affected, while others might not have any noticeable symptoms.

The main symptoms of endometriosis are:

·       pain in your lower tummy or back (pelvic pain)

·       period pain that stops you doing your normal activities

·       pain during or after sex

·       pain when peeing or pooing during your period

·       feeling sick, constipation, diarrhoea, or blood in your pee during your period

·       difficulty getting pregnant

The only way to officially diagnose Endometriosis is a laparoscopy.

Endometriosis is categorised from 1-4, 4 being the worst

Stage I — minimal endometriosis is characterized by isolated implants and no significant adhesions

Stage II — mild endometriosis by superficial implants less than 5 cm in aggregate without significant adhesions.

Stage III — moderate endometriosis and IV — severe endometriosis consists of multiple implants and scarring around the tubes and ovaries or on multiple implants, including large ovarian endometriomas with thick adhesions, respectively.

The NHS named Endometriosis 1 of 20 painful health conditions known to cause pain so disabling that it can prevent you performing daily tasks.

1 in 10 women of reproductive age in the UK suffer from endometriosis.

Around 1.5 million women in the UK alone are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age.

Currently there is no known cure.

I am not a doctor nor am I qualified to diagnose anyone.

All the above are facts I put together into one place for easy viewing.

More information can be found from following the links below.

https://www.nhs.uk/conditions/endometriosis/

https://www.endometriosis-uk.org/

https://www.nhs.uk/LiveWell/Pain/Pages/20-painful-conditions.aspx

http://www.endostats.com/

Endo Education- An Instagram account to raise awareness

Endo Education is an Instagram account I have recently discovered.

instagram.com/endoeducation

 This wonderful account popped up in my suggestions feed.

 It was set up and is run by a lovely lady called Wendy.

instagram.com/iamwendyengland

 She posts inspirational quotes and Endo facts but more importantly she posts other woman’s stories about their experiences. She asks you to write a little bit about yourself and your experience’s and if you’d like a photo to go with it. 

I think these little snippets into people’s lives is so important because everyone experiences things in different ways but also at the same time some people’s stories can be so similar. It’s a fantastic way to raise awareness but also bring people together, as this disease can bring with it a lot of mental health issues meaning you can feel so isolated.
 Personally, for me I’ve loved reading through other women’s experiences and to see I’m not alone and I’m not the only one feeling a certain way. It also lets other women going through the same thing know its ok to talk about it. 
The account lets us connect with other women going through similar things and to give each other support as well a providing much needed awareness.
We need more people like Wendy who are bringing much needed support to other women and providing a safe place to talk about these things.
 She poses questions to followers inviting them to share their experience or views on that particular subject. I think this can be very helpful because when you have a lot going on, your minds always buzzing and you can miss things you wouldn't usually. You can share something that ends up helping someone else that you wouldn't have even thought about saying before.
It's important to show our appreciation for women like Wendy and everything they do for other people.
💛

Endometriosis Revisited

So, after having excision surgery in October 2016 I was feeling great and ready to start living a pain free life. Afterwards I wasn’t put on any kind of hormone treatment as doctors suggest if you’re able to do so, to start trying for a child. After the first month had passed I was still sore and still in a little pain, but no way near what I had previously been in. It was December and I’d gone back to my doctor for more pain medication, he asked me how I was feeling and how I was getting on. I told him I was still sore and in pain but feeling good, I was told to keep a note of how I was feeling to take with me to my follow up. Everyone’s recovery time is different, so it can be difficult to know what pain is from healing and what isn’t. My follow up was 4 months after the surgery and by that point I was now bleeding irregularly and heavily again. I was also back to being in pain during my period. My specialist was certain the endometriosis was already growing back due to not being on anything to help stop the regrowth. I was told the most successful time to get pregnant was up to 6 months after surgery and that time frame was almost over. I was told before surgery that it probably wouldn’t increase my chances of conceiving naturally and I would most likely need help to conceive. So, I was referred to the fertility clinic as well as being prescribed more pain killers and told we would see where we are, at my follow up in another 6 months. Over the next 6 months it got worse and I just felt so drained and helpless. I was put on the mini pill to try to stop my cycle and to stop me from loosing anymore eggs as I have a low reserve for a woman of my age. The first month and the pill seemed to be working, but almost as soon as I’d started taking the second pack I had started to get break through bleeding. I was told it was normal and unfortunately there is nothing that can be done about it. I was on my third pack and still bleeding irregularly and I was due to get married in a few weeks. That was honestly my worst nightmare, worrying about wearing a huge white dress whilst bleeding. I phoned my GP to ask about a pill I had been told about that you could take for 3 days and it would suppress your cycle. She said they were actually stopping the prescribing of this on the NHS but she would give me the prescription as a one off. Thankfully taking this on the 3 days up to my wedding stopped the bleeding. Although it was halfway through December and I had started bleeding again, luckily there was barely any pain. But on New years eve I woke up with the most awful stomach cramps and feeling so nauseated, I thought brilliant what a way to start the new year. Since then my abdominal pain has come back with vengeance and not in any particular pattern. I try to take my painkillers as little as possible being that they are so strong, but recently its been so difficult to fall asleep and then intern wake up and get out of bed as the painkillers make me feel so sluggish. I know I will need further surgery but it’s a case of waiting to see where my fertility treatment will go.

For more information or support I have posted a link below.

https://www.endometriosis-uk.org/

Endometriosis- A little history and finally getting a diagnosis

I was 11 years old when I started my period and I thought it was awful and embarrassing. I didn’t tell my mum as discussing those things just felt so embarrassing for me. I knew where my mum kept her pads so just started using them, obviously it wasn’t long before my mum realised she wasn’t thing only one using them. She tried to have a conversation with me about it, but I just cringed. So, we agreed if I had any questions I would ask her, and she would buy me my own sanitary things.

Over the next few years I was in agony in the run-up and during my menstrual cycle. My flow was heavy and unpredictable, I was never regular. I remember being sat in social education, I could only have been 13 years old and my guidance teacher was teaching us about women’s periods. She said not to worry that all those horror stories you’d hear about randomly starting to bleed when you’re out and about were not true. This must be one of the only times I was open about mine. I immediately put my hand up and told her that wasn’t true as that’s how mine always started. The pain was crippling and nauseating, which left me feeling drained and fatigued.

I was 14/15 when my mum took me to the doctors after watching me take numerous sick days over the years. My doctor put me on the combined pill which certainly helped me, however for that 7-day break between packs I would get my period (at least I now knew when AF would appear) they were still painful but not as bad. I would continue to go to the doctor over the next few years with severe abdominal pain. I had a doctor call me a drama queen, my mum and I were shocked. Safe to say I never saw that doctor again.

Finally seeing another doctor, he started to do some looking and run some tests. I was diagnosed with coeliac, IBS and at one point they thought maybe crohn’s, none of these were correct.

I was 21 when I was seeing a neurologist due to constant headaches and I was diagnosed with Chronic migraines. Which meant I had to come off the combined pill, I was offered the mini pill. But having been on the pill for 6/7 years I decided to give my body a rest and to see if my body had fixed itself. For the first month I was fine, then it all went downhill the pain during my period was awful worse than I’d ever experienced it. It was only a few months after being off the pill and it seemed liked every month the pain was getting more frequent. Not only was I experiencing pain during but for at least a week before as well. Eventually I would start feeling pain during ovulation as well, I was now in pain 3 weeks out of 4.  I moved with my mum shortly after turning 22 and joined a new practice. My new doctor was amazing the first doctor to take me seriously, it didn’t feel like we were just going through the motions. I really didn’t think there was anything to be done after being misdiagnosed and told all my life that what I was feeling was normal. I eventually decided to ask my doctor to put me back on the combined pill even though I knew it increased my risk of having a stroke. He obviously wouldn’t and asked about the history behind my periods. This was the first time anyone had ever mentioned the words endometriosis to me, he referred me to a gynaecologist. I had an appointment the next month, the doctor asked me to describe what I experience and as soon as I’d finished talking he said it sounded like it was most definitely Endometriosis but the only way to confirm it was a laparoscopy. I’ve had a fear of hospitals since I was 3 when I had my tonsils and adenoids removed. So, I declined the laparoscopy he said he would give me 3 months to think about it and gave me his secretaries number to call if I wanted to have the procedure. It only took me to my next period to decided I had to do it the pain was now constant, and I always felt sick. So, I was put on the list and quickly received my surgery date May 2016 only a month away, I didn’t think it would come that quick. Surgery date came and there were 6 of us being seen that day, I was second on the list. I can’t remember much about the day as I was asleep most of the time due to the anaesthetic. I just remember being told I had stage 4 endometriosis and they couldn’t do anything with it as it required a lengthy surgery they did not have the time to do that day. I was told we would discuss everything further the following month at my follow up. The following month I went to see my doctor and he told me my only option was a further surgery which either he could do, or he could refer me to a specialist. I had already done my research and knew he shouldn’t even be offering to do the surgery as he did not have the technical skill or experience. I quickly opted for the specialist, he told me the current waitlist for a consult alone was 8 months. So, my mum looked up the specialist’s details and found he ran a private practice as well, so she booked me an appointment to see him the next month. She made sure he had access to my files and surgery case notes, my appointment couldn’t come quick enough. He agreed that I needed excision surgery and would require other surgeons there who specialise in bowl and bladder due to the extensive spread of the disease. We wouldn’t be able to go private as the hospital couldn’t have the team they would require. So, I would have to go onto his NHS waiting list, which he didn’t know how long it currently was. He would be in his NHS office the next week so would give his secretary details then. I received a letter soon after to say I was on the list and gave details of how to contact his secretary. My mum was in full on let’s go mode she wanted to know how long I would wait, so she phoned the secretary several times to chase up a surgery date for me. She eventually prevailed and got me a date of 18^th October 2016, I was so happy and so scared. It felt like an age waiting for the day to come around, it was the 17^th and I was being admitted so they could get tests done. It was me and another girl in one room, both there for the same thing. Both apprehensive for the next day, the day passed quickly enough with the tests and doctors coming around to talk through what would be happening. The following day my room mate was first, she was away for what felt like eternity. I was bored waiting and starving! Finally, someone came to collect me, I was wheeled down to the theatre. Where the nurses prepared me, and got me onto the operating table. The next thing I knew I was coming around in recovery the nurse asked me how I was, and I told her I was in pain, so she gave me some morphine. I was once again knocked out and the next time I woke up was back in my room with my mum beside my bed. I had slept most of the day and when the doctors came around I was still out of it, so they said they’d discuss everything with me the next day. The next day I felt very rested and surprisingly good (probably all the morphine) the doctors came around just after breakfast and went through what happened with me. All my organs had been stuck together and stuck to the lining of my back, my uterus was pulled up and tilted. It had taken them almost 4 hours as it was a complex surgery, but they said that was it. They freed everything up and excised the endo, I couldn’t believe it I was fixed and looking forward to being pain free.