My health journey , is it endometriosis?

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My health journey , is it endometriosis? My life as an endo warrior. A real life look at what a chronic illness is like

04/11/2019

Well some things have changed since I last posted. I still haven’t heard from the hospital, it will be a year this month. I was at the doctors a few times and tried different pain relief but NSAIDS just make me feel sick instead of feeling pain. A few weeks back I had a big decision to make about my job. As time went by I found myself being in more pain and more tired and really struggling. But stubborn as I am I continued to keep pushing. I changed careers I loved helping people but my body didn’t . The opportunity came up of my dream job I wanted since I was a little girl. To become a travel agent. I made the decision to take the job. It is less physical and gives me the opportunity to recover quicker after my surgery . It broke my heart and made me feel like a failure when I left the staff told me how good I was and how much they would miss me. I don’t know if they were just being nice or whatever but it was nice to hear it.

My relationship with my husband is drifting further and further away from each other and it sucks . I can’t even get close to him the thought of the pain is just tearing me apart.

Anyway that’s all for now hopefully I hear something from the hospital soon 🤞🏻

I haven’t posted a blog in a long time. To be honest I’ve been up and down like a yoyo fed up to the hilt with my health...
14/09/2019

I haven’t posted a blog in a long time. To be honest I’ve been up and down like a yoyo fed up to the hilt with my health. Watching everyday for the postman’s letter for my surgery which still hasn’t came . It’s a 54 week wait at the minute for urgent surgery . I finally stopped having a period about 5 months ago after I stopped the zoladex injections, 3 months was long enough all the sweating and bleeding was tearing me apart. And as soon as I stopped them I stopped having a period, which may never come back.

It hasn’t stopped the pain though. I still have such pain in my pelvis and uterus and back and some days are slightly less pain than others. S*x is still a disaster, crippling pain in my stomach and bleeding for two days isn’t my idea of fun. So me and my husband are still struggling with that🤦🏻‍♀️. Fatigue oh the fatigue I feel like my body is covered in lead some days and i just have to sleep I get zero energy and can do very little .

I miss my old self. I don’t drink, don’t go out , don’t show affection, have a limited friend circle which gets smaller by the day. Really struggle with work too, but I’m gonna struggle whatever job I’m in.

Oh and the bloating 👇🏻👇🏻👇🏻 see below look at my puffy pregnant belly that doesn’t have a baby in it, this changes hourly!

So that’s it in a nutshell of what you’ve missed. It’s as well I didn’t post much because it would just be me moaning 🤷🏻‍♀️

29/01/2019

Yesterday I went to my doctor to discuss the Zoladex injections that were recommended by my consultant at the hospital. Dr was happy enough to start them and I asked about the numbness in my toes being connected. The dr completely dismissed the fact that endo spreads further than the pelvic cavity and I told him I disagreed . I came away quite upset by the fact he knew nothing about this disease.

Fast forward to today I had to get my injection, to be fair I was terrified . I was told it was a big needle and the fact it’s used to treat cancer aswell. He gave me a local anaesthetic and then the injection. And thank god he did because that was the biggest needle I’ve ever seen. My hubby came to support me too.

The dr also told me he went home and researched and I was right! A small part of me felt victorious that he listened and admitted he was wrong.

If only all Doctors would be so honest x

I had a good few days with very little pain, and then boom cane back with a vengeance . I feel like someone is sticking ...
19/01/2019

I had a good few days with very little pain, and then boom cane back with a vengeance . I feel like someone is sticking sharp objects in my body and swooshing them around 😞 I can barely deal with being human right now

I haven’t posted in a while. Very much the same stuff going on , same pain same emotions feeling pretty fed up.I phoned ...
08/01/2019

I haven’t posted in a while. Very much the same stuff going on , same pain same emotions feeling pretty fed up.

I phoned the reception to find out if they had an idea of when my surgery would be and she said it could be up to 40 weeks 😭 I broke down. 40 weeks like this? I feel like I’m falling apart. I’m distancing myself from everyone. My husband my family my friends and even distancing from myself . This is no life at all 😣

In a moment of madness I stalked my consultant and sent him an email of despair. Feeling lost and pained I needed some sort of reassurance from the first professional who has taken me seriously in 10 years.

He phoned me back, (to my surprise) and was so lovely . Even the sound of his voice just puts me at ease. He totally related and empathised with my situation, and agreed he would look at his waiting list and see where I was and put me on his cancellation list. He also suggested for the time being to get put on injection that stimulates early menopause for a temporary time to stop any more periods and any more growth.

I feel a bit sad though, I have just celebrated my 30th birthday and feel like I’m about 70 years old. I want to sleep all the time And feel like my body is fighting against me. I feel betrayed by my body . It really sucks . The fact I have to take a hormone to stop a natural process that happens in my body. While other women’s organs don’t work and can’t reproduce or have periods.

So yeah , mixed emotions all round but I have to try anything to get me back . I hate the person I am right now

23/11/2018

I have spent the last week trying to get an appointment with the gp about pain relief. The co codamol just aren’t cutting it anymore.

Finally today I managed to get an appt with dr Allen ... I suppose any dr is better than no dr. Even though this one gets awkward when you mention any part of the female form.

He is also one of the dr that has fobbed me off about my period pains and told me it was ibs . It’s funny how so many women who suffer with this get passed from pillar to post with different diagnostics until the pain is too severe and the endo has spread so much it’s causing really bad problems .

When I went in to the office , I just broke down . I cried about how I’m so tired , how I’m always in pain and I apologised for crying. Not to him, but to my daughter. I don’t want her to see me this broken shell of a woman she is meant to look up to .

It’s just frustrating to go to bed in pain and wake up in pain all the time. I am struggling to get things done and even the smallest of tasks are exhausting me.

He has given me naproxen . To take alongside the cocodamol oh and a tissue for the tears. I’m hoping this gives me some relief.

20/11/2018

So today my pain has been worse and I’m bleeding a bit . I have joined a great support group even though the majority are from America the ladies are lovely and I feel less alone.

I also found out that it usually takes between 8 and 10 years for a woman to be diagnosed with endo?

Makes sense since I’ve been fobbed off for about 9 years

18/11/2018

Falling on deaf ears

So today I’ll talk about how I’ve been over the years. After being at the dr last week, I looked up more information on endometriosis. And after years of going to the gp and referrals to gynae, no one has ever suggested endometriosis.

I’ve always had sore heavy periods. But always got fobbed off with its natural.

And since the was 15 I have had the worst type of lethargy and tiredness come and go forever blood tests for anaemia. All came back clear.

I have been back and forth to the dr for the last 8 or 9 years about bleeding during s*x and pain and bleeding between periods. Even one dr suggested it was because he was too big or a hormonal imbalance.

This year I got a referral to gynae about the bleeding and they discovered cells on my uterus they decided to put in the mirena coil to reverse the effects. Getting the coil put in was one of the sorest things ever . I cried and screamed at the consultant and nurse, but I knew I needed to try it at least.

Since just before the coil got put in I started getting these pains shooting down my right leg which came over me more and more frequent over the last few months.

The gynae dr brushed it off and didn’t connect it to the coil. I had a lot of discomfort with and they kept scanning and checking it was in place which it was, and they discharged me around 6 weeks ago.

When seeing my new consultant, he was shocked I was discharged and that no one investigated it further. Hence why he has taken me under his wing.

It’s shocking how often this illness goes unnoticed and untreated , until the point you are in excruciating pain. I believe I have had it for a very long time. And I do t know if the mirena coil has woke it up or it’s just a coincidence. Only time will tell the damage it’s been causing to my insides

17/11/2018

THE TIP OF THE ICEBERG

This is more of a diary I’m keeping for myself, I have decided to blog after the recent events and maybe someday I will share this with people for awareness.

I think I should maybe start from what’s been happening recently. Ten days ago, I woke up with the most severe pain in my stomach! I was doubled over in pain could barely stand and breathe and actually thought something had burst or stabbed me internally.

After phoning the gp I was advised to go to a&e after five hours of bloods and urine tests, an internal to check for

⭐️ectopic pregnancy
⭐️miscarriage
⭐️appendicitis
⭐️movement of the mirena coil

Everything came back normal, now when your in this much pain, as much as it’s reassuring to know you don’t have any of these, when the dr says ‘I don’t know what’s wrong’ it is so deflating. I felt like a liar, a fraud an attention seeker and so confused because I knew there was something really wrong inside me.

The dr gave me strong medication and put me on referral to the rapid gynae clinic. But she had no idea when I’d be seen, so taking strong painkiller and being ‘stoned’ from them was my only option for the time being.

So four days later and still the pain hadn’t eased and was travelling in to my leg and back by this stage, I went to my gp. Begging for help. Unfortunately she had no access to the clinic it’s only through the hospital, so more pain relief was given.

Later that day I received a call and got an appointment for two days later .

When I went for my appointment, I didn’t know what to expect but I wasn’t leaving without help.

I walked into the waiting area and the room was the cervical and ovarian cancer unit. I was terrified and sad to see so many women in this room. My dr was a young man in his 30’s and he had two trainee nurses with him, and as much as I hate showing the world my f***y, I knew he would be thorough with my examination for there sake.

The dr decided to scan me first and it was all clear just one cyst on the opposite o***y to where the pain was.

And then an internal, these are always painful for me, but he hurt one spot in particular.

He asked some questions and most of my replies were yes. And he asked had anyone ever mentioned about endometriosis before? I said no.

He believes that’s what I have and it’s spreading to my sciatic nerve and other places. Endo can not be seen on scans .

So I now have to get a laparoscopy (keyhole surgery) to see the damage and hopefully remove it.

Hearing the word surgery is terrifying , but I honestly felt relief. Someone was listening to me, someone understands the pain I’m in and is willing to help me now find out what is wrong, and how to ease the pain.

In my next chapter I’m going to chat about my life over the last few years .

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