Tag Archives: endometriosis

Do I Have Coeliac Disease?

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NB To get a diagnosis you have to at least have a blood test and then potentially a biopsy via endoscopy (eek). In medical terms it appears that you either have it or you don’t. There’s no diagnosis for gluten sensitivity. Not yet anyway but I hear it’s being worked on.

I’ve had a lot of the symptoms associated with Coeliac Disease. However, what made me decide to give up gluten was my period. I was suffering horrendously with pain and discomfort. Every month was the same and I’d be so worried a few days before. I knew what was coming. Severe pain where I couldn’t even stand upright, never mind walk normally. I was so bloated I looked like I was pregnant. I couldn’t go to the toilet without feeling like my insides were being teared apart. I was exhausted and frazzled. I always thought that the pain felt more in my bowels than where you’re suppose to get period pain. I had brain fog, anxiety and felt very low during them. I had cystitis every time. After researching, I was convinced I probably had endometriosis and went to the doctors. Many times I was told to go on the pill. I didn’t want to. I had bad side effects in the past that lasted all month and I hated the idea of putting synthetic hormones in my body to mask the fact that my body was suffering and was telling me to heal. However, the pain got worse each month and I had to do something. I even started to feel some of the symptoms throughout the month. I very reluctantly took the pill and oh did it cause havoc. They gave me a progesterone only pill because it was suppose to cause less side effects. So not only was I getting headaches and anxiety from it, I was constantly in a really bad mood. I felt detached and worthless, to say the least. The doctor told me to give it time so I did.

The first month was just as bad, if not worse, than my period normally was. It was my birthday and I was in agony. I had took some pills and decided that I wanted to go out for my birthday. I spent two hours in the passenger seat of the car, doubled over, dreading every bump in the road. I raced round Ikea the quickest I ever had, hunched over and then headed home. I spent the rest of the day in the bath and in bed and the next day my stomach was so sore. The night before I had been out for a birthday meal and I had eaten a pizza. I was convinced it had something to do with what I was eating. I looked up to see if there was a correlation between dairy, gluten and endometriosis and there was. I don’t think there were studies but real people online in forums saying that giving these things up helped.

My period the next month was a breeze. Barely any pain and I almost felt like I had finally found a cure. I knew deep down that I was masking it but for a while it was worth the side effects. Then I read a book called Sweetening The Pill. This confirmed that I needed to stop taking it. I had already been vegan for a few months and my digestion has improved so I thought that perhaps I would be OK or I could at least tolerate it. When I came off I was faced with pain again. I felt like I had no choice but to go back on it. I begun researching some more about a gluten free diet. It didn’t make sense that it would work – how does gluten affect the menstrual cycle? I’m not going to get scientific but many have reason to believe it does. I had nothing to lose so I gave it a go. I had very little pain on my next period and I was so happy. The one after that was completely pain free. It had worked. My life improved greatly after that. I also began to feel better in other ways too. My headaches and migraines decreased, my cystitis was hardly an issue anymore, I had less acid reflux and nausea, my cycle regulated and I felt like I had more energy.

It’s hard for people to understand that you have a gluten sensitivity. There’s this stigma around it that if you haven’t been diagnosed, you don’t have an issue. I can feel it though, but I don’t want to tell people I don’t eat gluten because it makes my periods really bad. I didn’t tell many people and I still ate gluten occasionally when people gave me cake and biscuits. This past month I ate a lot more than usual. I had bread with a vegan burger, bread rolls to absorb acid when I was out and felt bad, churros at a vegan festival, several cakes as people at work had made them especially so I would have felt bad not to eat them (plus they were tasty) and I had some falafel. I decided to use it beneficially as an experiment.

So the results are almost all in. My stomach hasn’t been feeling good. I’ve had more nausea and acid reflux. I had daily headaches for over a week (I used to get chronic headaches as a teenager). My period is days late (so it’s already becoming irregular) but I can tell it is coming because I have a little cystitis and I can feel a little pain. I had a week and a half of PMS. It hurt to go to the toilet this morning. Lastly, my mood has been very low. I think that’s all of it.

Coeliac Disease can be very detrimental to your health, which is why I have realised that it is very important to know if I have it or not. In order to get tested, and if the doctor will actually allow me to, I will need to eat gluten everyday for several weeks. This is the bit I am not looking forward to. I probably won’t go through with the endoscopy unless I can get a lot more sedation than last time. I had too much adrenaline and as soon as they were putting the pipe in I was pulling it out and couldn’t calm down. It was terrifying! I will book an appointment shortly.

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I Hate The Pill But Have To Take It // Possible Endometriosis, Depression and My Struggle

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Hi everyone! I sure hope you are all doing well because I am not. I am sat in bed at 1 pm on a Saturday afternoon because I feel like I cannot get up. I did get up to pee but came back to bed. I did get up to make a smoothie but, again, I am back in bed. I am writing this to get it off my chest and also to connect with other women who might be having issues themselves.

Oh the joys of being a woman, hey. Or just one with unbalanced hormones. I’ve been trying really hard to be OK but I’ve had enough. Completely and utterly had enough. That’s why all the decisions I am suppose to be making haven’t been made and all the things I need to do haven’t been done. Instead, I have been trying to pretend to be happy and be normal but after having a few days off work, and having no real reason to pretend, I am not getting up and I am not making decisions and I am not doing stuff.

So here’s the story, I started getting really bad periods in 2012. Maybe even earlier but then for sure. That’s when I first started a full time job. Everything changed. I moved out and started working ridiculous amounts of overtime and I wasn’t eating well at all. No fruit or vegetables – just processed sugary food and lots of dairy. I didn’t know how to look after myself. The previous year I had started taking some new medication for acid reflux and stomach issues after overusing ibuprofen – guys please don’t take it on an empty stomach. One night I was working late and I was in a room full of guys. All of a sudden I got bad cramping and could barely stand. I hobbled to the canteen and sat down and took some paracetomol. Once that had begun working I went back and just said I didn’t feel well and got on with my work. It was just cramps, right?

After that, my periods got gradually worse. My cycle was irregular. Some months it only lasted 21 days. I was low on iron, tired and fed up but I kept going. I started to get really anxious around my period. Worried about it coming; worried about the pain, the blood loss and the fatigue which made it worse. Just over a year later I was in a new job and it was getting increasingly worse until it got to the point where I couldn’t work with that pain. It was severe and the worst pain I’d ever experienced. When it was bad I just curled up in a tense ball and couldn’t move, let alone stand and walk about. I was so bloated and after the cramps went I was left drained and sore. I lost my appetite too and had many other symptoms. My bladder was affected greatly. I was back and forth to the doctors with UTIs. Only the cultures came back either clear or there was too much large particles in my urine to test it. I was fed up and feeling hopeless. The doctor put me on these tablets that are meant to reduce bleeding and clots even though I said I couldn’t take anti-inflammatory medicines. I experienced bad acid reflux after the first couple and stopped taking them. They wanted me to go on the pill but I really didn’t want to.

Yet again, the next period was worse than the previous. I went on holiday abroad for the first time in my life. My period just had to show up then. If it wasn’t for my friends, I wouldn’t have forced myself out of the hotel room. I was eating at different times, which didn’t help and I was so exhausted that I had to go back to the hotel room twice. I was upset and didn’t know why this was happening.

I looked up my symptoms online but this time I didn’t just look up the cramps. I looked up them all. Endometriosis was something I had never heard of but apparently as many as 1 in 10 women may have it. It’s an autoimmune disease and not many doctors really know about it. Basically, endometrial tissue, which lines up the uterus and breaks down during a period, grows in places it shouldn’t and breaks down in the body during a period. No one seems to know how it happens but it causes a great deal of pain, infertility and can only be diagnosed properly by surgery. The endometrial cells can be treated during surgery but it’s only a temporary fix and will most likely grow back. I looked up accounts from women who were experiencing it and indeed I appeared to be going through the same thing. OK so it’s not a diagnosis but to me that it what I have.

At my wits end, a nurse finally convinced me to give the pill a try. I told her about the daily headaches the pill gave me when I was a teenager and my Nan asked me to take it and how it made me feel dizzy and not myself. After trying a couple of different pills and then not doing me any good, I was put on Noriday, a lower dose Progestin pill. It appeared that I was sensitive to oestrogen. Many people believe that too much oestrogen causes endometriosis, as after all it is a hormone imbalance. The first period I got on that pill was on my 24th birthday. I’d just been to Cambridge the previous day and had a lovely meal out with my friends. The next morning I woke up in pain. I rushed to the toilet and my period was very light but it was there. If it was light then why was I in so much pain? But it was my birthday and I was being taken to IKEA so I got up and took some paracetamol in hope that it would improve. After a bad car journey, I prepped myself for getting out and walking around the shop, which I managed to do – slowly and slightly bent forward. Back in the car I cried. I took an uncomfortable bath and then went to bed with a hot water bottle. The next day I spent on the sofa/in bed with a hot water bottle.

The pill wasn’t working, I thought but was told to give it three months. I dreaded the next month to see what hell it was going to bring. It was like I was being tested and no one else seemed to be struggling. I had a few days off work and my boss was sympathetic. One time, I rang in and said I would come in if I could do something sat down all day. Being at work feeling like that was really tough. I was inside this bubble of pain and the people around me were hazy.

Finally my period the next month was so easy to handle. My bladder issues eventually got better – never fully went away but it was an improvement and my anxiety diminished. I had my life back. Or so I thought. After the initial relief, I begun to have other issues. The pill was to blame, of course. I was constantly in a low mood. Some days I had no motivation to do anything and I felt tearful a lot. I didn’t want to be around people and I was getting behind with my Open University work. But the pill was the only relief I had from the hell so I kept taking it. I had no choice.

That was the beginning of last year. I had researched alternatives before and read that a vegan diet might help. I really didn’t think I would have much to eat and blew off the idea. Later in the year, I saw some films and did some research into veganism – I was already a vegetarian and so in February this year I became vegan for ethical reasons. I was feeling good about my decision but I was still so focused on everything bad in my life and in the world. I still hated being on the pill. I wanted off really bad. I read a book called Sweetening the Pill: or How We Got Hooked on Hormonal Birth Control and it just made me more mad. Putting fake hormones into my body was something I never wanted to do as it just felt wrong. Why go against nature? I thought the pill was a great thing as it gave women the ability to take control over her fertility but I was wrong. There are so many long term affects of the pill too and I was concerned.

After eating a vegan diet for a few months, I wondered if I should stop taking the pill and see how things go. What did I have to lose? I felt really good about my decision but I was a little anxious about how I might feel and how my period might be. The anxiety got worse but my mood was lifted. I felt myself again and what I can only describe as brain fog had disappeared. I hadn’t even realised I had it. Everything was clearer, brighter and better. I got up in the morning and had clarity and I didn’t have to encourage myself to get on with life because the alternative was to give up. I spent time in work with a clear head and not one that often made me want to lie down on the floor and cry. OK some things were a little tricky. I had a couple of mood swings, in private of course, and some headaches and some shaking – which I put down to the rise in oestrogen my body was experiencing. My body is so sensitive to change. My period came and I had some mild cramping. It really wasn’t bad. I was relieved but still concerned. The next one came. I was sat at my computer, luckily off work, and I got some pain so had to stop what I was doing and wait for it to pass. It didn’t pass and suddenly got worse. I grabbed some paracetamol and curled up on the sofa. It hurt so bad that I couldn’t move and I couldn’t cry. I just sat there until I plucked up some courage to put the TV on so I could try to focus on something else. The next few days I experienced all the symptoms I had before. Even my bladder was acting out. Great. Once I realised that I had to go back on the pill because there was no way I could take 3/4 days off work a month and go through this again I was gutted. I was so tired and it took me days to get my appetite back. Luckily the next period was pretty much back to normal apart from some bladder discomfort. 

Days later my mood shifted. I was back to being down and now I feel worse as I feel completely helpless. Everything bad is getting me down again and I am going to see my therapist next week after not seeing her for a year and a half. I went to Lincoln yesterday but felt like I was in a dream world. How can I possibly choose between the two? Do I stay miserable for the rest of my life or do I suffer with severe pain and misery for a few days per month. I don’t feel that going to the doctors will help. I’m looking into alternative therapies, naturopathy, diet and fitness as many say these things can help and may even cure it. I don’t feel very hopeful. I am going to try cutting gluten out of my diet as that is meant to have helped many people. However, I don’t know if I have the guts to go through all of this again just to be crushed. Taking the pill is NOT the easy way out. At least not for me.

So here I am in bed. I’m back at work in 4 days so I need to start to pick myself back up for then but not today. I am going to continue watching Friends and not thinking about how bad I feel right now. Please leave comments – I will answer them all. Thanks for reading.

Update: I am still going to try cutting out gluten and upping my exercise. In a few months I am going to try coming off the pill again. I still have a lot of research to do but I am feeling more hopeful right now.

Update: After cutting out gluten and only eating it on occasion, my period pain has vanished. I am so happy. I have a feeling that the really bad pain I got when I came off the pill was due to actually coming off the pill as it was different to the pain I felt before I went on it. It was located in a different place. Changing my diet was all that was needed for it to heal and I’m so glad I found a natural way of healing.