Well I am really having a difficult time at the moment. I have been feeling extremely unwell for a few weeks now. My whole body aches, I’m having heart palpitations, dizziness and Iv fainted twice. Iv been trying to get a doctors appointment for over a week but it’s difficult right now with the covid situation.

I finally got to speak to the doctor and she said it sounds like I am having a hyperthyroidism relapse. Off to the hospital that same day for blood tests I went.

The following day the doctor called with my results and as suspected I am having a hyperthyroidism relapse. She asked me to go in for an ECG. It was concluded that I have a very fast heart rate and she diagnosed me with atrial fibrillation. She gave me a prescription for carbimazole and beta blockers. She also said she’d urgently refer me to the endocrinologist and cardiologist so I’ll be seeing them both within two weeks.

Fast forward to today, three days since getting the new diagnosis and my period has arrived. So not only am I in bed in agony but I am also too dizzy to stand up and feel like my heart is going to push it’s way out of my chest any moment. I really am being tested right now.

So todays daily medication consisted of tramadol, feminax, transanemic acid, mefanamic acid, carbimazole, sertraline and propranolol. Say hello to my new pill organiser 😀

Iv just managed to have a lovely weeks holiday away with my husband and son. We had to plan it around when my period would be so we could be back home for when the pain started.

It was so nice to be away, relatively pain free and have time to think.

I did get a call while away from my doctors secretary to explain that she had an update for me. The gastroenterology team that she referred me to has rejected my referral as my stool sampled showed no inflammation and so they just presume I have IBS.

The problem with this is that my last laparoscopy showed endometriosis and lesions on my bowel so surely that is what is causing my daily bowel pain, surely if removed my symptoms will be easier?!

The doctor has said because my surgeon has left the hospital I’m under it has caused some issues and she is referring my to another specialist clinic. It’s a great clinic with amazing feedback but I will be waiting at least six months for a standard appointment and I’ll have to start all over again from the beginning with investigations and surgeries before concluding that I need a hysterectomy which I am 100% certain of.

It seems that the only real option now is to either go private or continue to stay in agony for another few years. This is having such a detrimental effect on my mental health, relationships, work, my whole life. 😢

When my doctor called back, she said she would write to the hospital I am under explaining my situation and that I need to be seen….. almost two weeks later and I still have not heard anything. I feel like Iv been left in limbo and really unsure of what to do.

I have booked an appointment with my GP based at my work to see if he can help at all by referring my elsewhere.

If all else fails I will have no choice but to go private. I need a hysterectomy, I know that it is the only cure. I don’t know why are doctors happy to leave me in pain for months on end waiting for one 😢

This months period has honestly been the worst of my life! It’s feels like I have been in constant pain for a month.

A couple of weeks ago I had a “stitch” type pain in my side and ended up at AnE. It was horrendous, I was sat on the floor cannulated waiting for 7 hours, to then be moved to a bed on a corridor, a couple of hours later I was told go home, in the middle of the night! It was a horrible experience and ended with me going home still in agony with no answers. Luckily that pain has gone now but I still don’t know what it was or what to do if it happens again, I don’t feel like going to AnE again, that’s for sure!

Anyway, back to this months period pain. The pain started a week before my period full flow started. This seems to happen each month now, full on period pains for a week with flaky red skin falling out. The best way I can describe it is like dead skin coated in old blood. Then a few hours before the full flow arrives I’m in so much pain that I can’t stand up straight, I can’t walk or get comfortable in bed. I roll about in bed and take so much tramadol that I eventually sleep for 15 hours or so. It is a cycle that lasts a few days. I can’t make plans, if I have they are cancelled. I can’t work, luckily my work are very understanding. I can’t be a mother to my beautiful miracle child, luckily my husband is fantastic as is his mother who helps too.

There was a time when one tramadol a month would help and completely remove my pain but now even after 15 a month the pain is as bad as ever, I’m just very drowsy too.

Today I really have reached breaking point, I have called my doctor (so sorry Tricia the receptionist) for crying uncontrollably down the phone at you. I am now waiting for a call back from the doctor.

My period has arrived and is honesty no better at all. If anything it’s the worst it has ever been.

The daily bowel pain has defiantly improved but the monthly period pain hasn’t, that’s for sure!

Honestly the pain was so so so bad that I took to Facebook to announce how bad it is, I’m not sure if it was a good or bad idea but all I was thinking is that the world needs to know about this if we have any chance of preventing it getting so bad for the younger generation.

The evening my period arrived was the worst part. I couldn’t stand up straight as the pain was unbearable. I stumbled downstairs at around 11pm to look for pills but I stood at the kitchen knife block contemplating doing myself some damage. I talked myself out of it but still took way more pills than I should of. I’m not proud of it at all, I was desperate and just wanted the pain to stop. I couldn’t make it back upstairs to bed so I crouched down on the kitchen floor for an hour or so. Once the pain had settled down I went back upstairs to bed and slept.

I slept well into the following afternoon and in the end slept all day and the following night. I think it must have been about 32 hours in total. I know I can’t go on with this happening every month as I have a young child to look after. He is having open heart surgery in a few days too so there’s not much I can do about myself this month, I’ll have to deal with me when he’s all better.

Iv now had my review but am still feeling as lost as I was. My surgeon has told me that I have Adenomyosis as well as endometriosis and the only cure is a hysterectomy. He also said that a hysterectomy may/may not relieve all my symptoms and I am looking at an 18 month wait for the surgery.

In the meantime it’s just a case of managing my symptoms as best we can. I will need to continue taking tramadol for the pain and I have been prescribed some new medication too. We will have to see how things go I suppose. I’ll post an update when the next period arrives…. wish me luck.

Fast forward two and a half years and all of my endometriosis symptoms are back with a vengeance.

👉I have daily bowel pain, I can almost feel the whole digestion process. It’s like a knife scraping along my insides every evening.

👉 I have horrendous pain when having sex, so haven’t had any for a verrrrrry long time. This pain also occurs after mastibation.

👉 I suffer with chronic fatigue, even 16+ hours sleep a day is not enough, I’m always tired and this much sleep with a child is just not possible.

👉 When I’m on my period I literally have to be in bed for at least 3-4 days. The pain is so bad that I can’t move, I can’t stand up but I cant lay down flat either. I drug myself up with tramadol but that makes me so tired and like a zombie, I can’t drive on it either.

So I have been back to the doctors to explain my symptoms are so bad that I just don’t see the point of living a life in pain. She arranged for me to get back and see my surgeon who booked me in for another diagnostic laparoscopy to see what’s going on. the laproscopay was on 5th March with my follow up booked for 26th May.

So when I woke up from my laproscopy I was told that I had confirmed stage 4 endometriosis and the surgeon had removed as much as he could manage to get to. He also told me that I would not be able to conceive a child naturally and that I would need a hysterectomy in the near future. I was advised that if I wanted to have children it would basically need to be now or never and I would need help in the form of IVF.

I had not considered children in the near future. I’d always assumed I didn’t want them as I have never been maternal but when I was suddenly told it wasn’t something I could choose everything changed. My husband and I then made the decision to go for it and try IVF.

After the laproscopy my body needed time to heal and so I was given a monthly injection to induce menopause. The plan was to be on this for at least six months however after the second month I began to feel so low and considered suicide. We then made the decision to stop the injection and my next surgery was moved forward quite quickly.

A few months later I had a laparotomy where most of the remaining endometriosis was removed along with 80% of my left ovary which further reduced my chances of having a child. I was terrified and desperate so kept telling myself “it just takes one egg” and I don’t need them all.

A few months later, we began the IVF process. Now, I don’t want to go into detail about the process, how many rounds, how many embryos etc as that is a whole other very long story. The point is, after a couple of years, our last and final embryo was transferred. We had agreed we would 100% not go through the process again.

On the Christmas Eve of 2017 I lost my job, I was a store manager for a company that went into liquidation. On Christmas Day, we found out….. I WAS PREGNANT!

On 20th August 2018 our miracle was born by c-section, his name is Freddie.

So during the years that I was on the pill I struggled with depression and anxiety. I was actually diagnosed as a manic depressive. I had suicidal thoughts and began to self harm. It was suggested that I stop taking the pill as that could potentially be causing my mood swings. I stopped taking it and my mood improved. BUT my period pain got worse, much worse. This began in my late teens. I was told that some girls just have heavy and painful periods and I’d have to accept it or take pain relief. I stupidly accepted that.

I went back to the GP a few times and was told I’d need an early smear test. I had one which was abnormal and continued to have them every six months for a couple of years. I then had to go for a colposcopy and for some laser treatment to remove pre cancerous cells. Then smears were once a year and came back normal.

Years later my pain started to become unbearable. I would spend full days, sometimes a few days in bed as it was just too painful to move. I also started experiencing pain with bowel movements and extreme pain during sex. My husband encouraged me to go back to the GP. I was then referred to a gynaecologist in my early 20s.

When I visited the gynaecologist he said he could feel some lumps around my cervix and said he thought I may have endometriosis. I had never heard of it before but I feel so happy that someone was finally taking me seriously. He booked me in for a laparoscopy a few months later.