My Endo Journey

Blogging my Life with Stage 4 Endometriosis

How I got my Excision Surgery on NHS

My first ever surgery was the draining of a cyst in 2004. Fast forward 13 years later and my pain has become agony and I have struggled to conceive. Despite my gynecologist diagnosing endometriosis in an operation back in 2004, for 10 more years I was fobbed off by doctors, or referred to the wrong specialists (urologist, gastroenterologist, psychologists, you name it!) Well now, I’ve finally got my excision surgery booked in, and here’s how…

Fobbed off by Doctors

I remember once going to a doctor being in agony to eat or go to the loo. He said ‘I think you’re well enough to go back to work’ and refused a doctors note. The next day, I was crippled in front of my class (I was a teacher at the time) and ended up leaving half way through the day. I saw a different doctor (coincidentally a female one!) who signed me off for 2 weeks immediately.  (I must do a whole separate blog on this!)

My Laparoscopy Referral for Endo

Last year, I finally got referred for a laparoscopy. This was mainly due to the fact that I had been trying to conceive and could not. So, let’s just get this straight….it’s ok for a woman to be in chronic pain, but not ok that she can’t conceive?! Anyway, I finally got my long awaiting laparoscopy in 2016, 12 years after my first suspected diagnosis. It confirmed stage 4 endo (see stages of endometriosis).

At my follow up appointment, and after a traumatic miscarriage, I went to see my specialist. He emphasised the risk of operating and suggested….guess what? Trying to get pregnant again?!?!

Pregnancy does not Treat Endometriosis!

Here’s my problem guys – pregnancy is not an answer to endometriosis. Quite often, after giving birth, endo symptoms return. Not only will the woman be in chronic pain, but she will also have a baby to look after.  What’s the alternative? Hormones? Pump your body with hormones that throw your body into menopause or make you depressed? I don’t think so!

How I finally got my Excision Surgery booked in with Ediosagie

I posted on Facebook, in the hope that I could both raise awareness and seek advice. It was a bold move, considering the personal nature of the disease…

Thankfully, a friend was listening. A teacher who I used to teach with sent me a message to my inbox, saying ‘I had endometriosis Amy, you need this surgeon, and this is how you get him!’

The surgeon that my friend Cath recommended was Ediosagie at St Mary’s in Manchester. She recommended for me to book a private consultation with him at the Alexandra BMI. The consultation was £200, and the best £200 I had ever spent! Finally, someone was listening to me, acknowledging my symptoms and giving me hope.

St Mary's hospital Manchester Excision surgery

‘Your endometriosis is very bad, Amy’ he said sternly. ‘I know!’ I replied, ‘I can tell from being in agony!’ He told me that he can fix it, but it was going to be two surgeries. After the shit I’ve put up with for the last few years, I’m up for anything!

Dr Ediosagie wrote a follow up letter to my GP, and I got referred on the NHS, so I can get this excision surgery with him for free. I went to see a different GP in my surgery at the peak of my agony and she wrote to St Mary’s asking them to expedite my surgery. My private consultation was in February, and the date of my first laparoscopy with Ediosagie came for 26th April.

Alexandra BMI Ediosagie Endometriosis excision

If you are in the same situation as me, living with stage 4 endometriosis and the severe symptoms, get a private consultation with Ediosagie at the Alexander BMI, and then get referred through the NHS. We all have patient choice, and deserve endo specialists, not just a regular ob-gyn.

Of course, I’m writing this as a patient in UK with access to the NHS (National Health Service). My heart goes out to US #endosisters who cannot get insurance to cover endometriosis excision surgery and also to those in countries where excision surgery is not so readily available. Love to all #endosisters.

 

 

 

Living with Stage 4 Endometriosis: Today, I had to Admit Defeat

This week was one of the toughest I’ve experienced for about 6 months.

To set the scene, I finally started a job that I love in January. I moved to Liverpool to be closer to my job, family members (my partner’s family actually!) and good hospitals to help me to deal with my stage 4 endometriosis.

The Real Agony of Stage 4 Endometriosis

On Monday the pelvic pain started on cue with my monthly cycle. By Tuesday, I was struggling to walk without pain and on ibuprofen (Ibuprofen hardly touches my end pain, which is one of the reasons I hated the Motrin endometriosis campaign). By Wednesday, I had maxed out on cocodomol and sat at my desk like a spaced out zombie with a literal ‘pain in the ass’! Wednesday night saw the usual agony and no sleep (I got about 2 hours).

Then Thursday happened, I had to admit defeat. I’d tried all of my usual coping strategies – not eating, drugging myself up and drinking water. I headed to Runcorn on the train (where I was supposed to do business consultancy).

A Miriad of Endometriosis Coping Strategies

As a sufferer of stage 4 endometriosis you develop ‘coping strategies’ that you think will allow you to get on with your everyday life. These ‘coping strategies’ are to mask the disease from others, so that peers and colleagues see you leading a ‘normal life’. They are an attempt to keep your job, relationships and friendships going despite the horror that is endometriosis.

I sat in First Class so that no-one could see me and I could be on my own. I felt like all of my organs were being pulled down by a heavy weight. I could eat, drink or even go to the loo. When I got to Runcorn station, I tried the coping strategy of shutting myself in loo until I felt a bit better.

I didn’t. I nearly passed out.

My ever-supportive manager was waiting for me in the car to go to the business meeting. As soon as I got in the car I think he saw the pain in my face. Tears started rolling down my face. ‘You should have phoned in sick. You need to go home.’ He was right. I was in denial, saying ‘this is stupid.’ I got straight back on the train to go home with pain that was crippling me.

living with stage 4 endometriosis

Seeing my GP Doubled up in Agony

Only I didn’t go straight home, it was too bad. I went straight to the doctors. Doubled up in agony, I begged them to fit me in. They found me an appointment and tried to get me to be seen sooner. They were so understanding, and helped me in to the doctors surgery.

This was the first time I had seen my new doc, and what an impression I must have made! He could see that my agony was so severe that only morphine would barely touch it. This, combined with the fact that I hadn’t eaten for 24 hours and a low blood pressure.

Getting admitted to Liverpool Women’s Hospital

After the trauma of my visit to A and E in York last October (that’s another story), I was scared to death of hospitals. But, he sent me to Liverpool Women’s hospital and they were absolutely brilliant. I was admitted for just 48 hours to get the pain under control and my eating back to normal.

Liverpool Women's Hospital

One thing I have learnt this week – sometimes, with endometriosis, you just have to admit defeat. Don’t try to battle through the pain all of the time. Recognise when you need to rest or get hospital treatment.

Read about the four stages of endometriosis.

No Motrin, #PainisNotProgress

A couple of months ago, Motrin, US analgesic company promoted their #painisprogress campaign to promote their drug to sufferers of endometriosis. I first saw a mention of this campaign in the Facebook group Endometropolis – people were clearly not happy. I decided to head to the Motrin Facebook page to check out the Motrin endometriosis campaign for myself.

Motrin Endometriosis Campaign

Pain Is Progress – WTF?!?

For starters – what a #hashtag. #PainIsProgress? Wtf?!?! Pain stops me from having a social life. Pain stops me from going to work. Endo pain means that I am doubled up and have to put my life on hold. It has had an impact on my finances, my relationship and my career (I actually had to retire on medical grounds from teaching). So no, Motrin, pain is not progress. Pain is debilitating. Get it right.

What Motrin probably don’t realise is that Motrin won’t even touch severe endometriosis pain. The only thing that touches mine is morphine.

Motrin’s Less than Tactful approach to Infertility

Then there’s the fertility issue. The lady in the Motrin ad found happiness when she adopted. My first problem with the way that this came across was that adoption was depicted as a solution to all problems. Yet adoption is not the same as having your own. Secondly, if you are suffering from debilitating stage 4 endo, there is no way that you would even be well enough to adopt and look after a child. It’s almost impossible to look after yourself.

Read more about why women were unhappy with this campaign on www.themighty.com.

My Response to the Motrin Endometriosis Campaign

A week ago, I wrote my comment on their Facebook page. ‘No Motrin, pain is not progress. Pain is debilitating and ruins lives. And adoption is not the same as having your own children.’

Today, I went to go onto the post to see if other #endosisters had commented and guess what? Motrin took it down. They have removed the ad from their Facebook page and YouTube. Rightly so, I just wish that they could have got it right.

The Problem with Pharmaceuticals and Endometriosis

My concern is that an increasing number of businesses and pharmacists are trying to profit from sales of pain relief for endometriosis. Whilst pain relief is needed to get through it in the short term, all pain relief and hormones do is mask the problem. What women with severe endo really need is surgical excision by an endometriosis specialist.

My Endometriosis Excision is Scheduled!

I’m scheduled in for excision surgery with Ediosage in Manchester. Provided that all goes to plan and I’m on the mend, I may feel ready to share this experience on my blog.

You can read about my first laparoscopy here.

You might also be interested in Travelling with Endometriosis.

Laparoscopy Diary – Day 4

I would say that the first two or three days after the laparoscopy are the worst. I am definitely feeling much better today (Day 4).  It’s four days after my lap and there is less pain – it’s just a soreness now. I wanted to update you on how I felt about laparoscopy scarring…

Laparoscopy Scarring and how it has Healed

Here, you can see my Laparoscopy scar and how it’s healing so far. What a neat job they have done! The skin glue is now starting to dissolve slowly, and the stitches are also dissolvable and will probably be there for another few weeks.

laparoscopy scarring diary day 4

I’m pleased to say that I am not worried about laparoscopy scarring in the slightest  they have also made sure that it is right on my bikini line! Wow!

Less Pain from Laparoscopy Happened for me on Day 4!

I have stopped taking the ‘evil meds’ (for me – these are Naproxen and Codeine) that started to give me nausea. I spoke to my GP as a telephone appointment, and he suggested for me to stop taking them (never change your medication without a doctors advice).

Around day 4, the pain eases, and you don’t need such strong pain killers. So now, I’m back on my ibuprofen as normal, and I don’t feel so sick and light headed.

What Tasks Can I Do in the First Week after my Laparoscopy?

Although I’m still taking bed rest, I have been downstairs to do simple things – get a drink or something to eat. It’s still not quite possible to do things that involve bending – putting washing in, loading the dishwasher and picking things up off the floor are still a challenge, mainly because of the bending.

Also, I am living in leggings and jogging bottoms because they are soft and comfortable. I don’t want to wear anything harsh like jeans, that might rub on the wounds.

Going Back to Work After a Laparoscopy

My sick note arrived in the post today, from my gynaecologist who performed the op. He has signed me off for two weeks.

There was ‘stupid old me’ thinking that I would be back at the office or the hotel on the Monday (my surgery was only on the Friday!) But that’s just not going to be the case.

Everyone takes different times to heal, so it’s important that you discuss healing time with your consultant. But, the general consensus is 2 weeks of rest, and longer if there are complications.

You might want to read my Laparoscopy Diary Day 2.

Laparoscopy Diary Day 2

Welcome to my Laparoscopy Diary Day 2. I’m recording my experience to help others to know what it is like to go through a diagnostic laparoscopy.

It’s 48 hours after my laparoscopy (stage 4 endometriosis) and I have to admit that I’m feeling rather sorry for myself! I can’t easily move at all. Getting up and down hurts and I can’t get in and out of bed without help.  It’s important to remember that although it is keyhole surgery, it is still abdominal surgery, and you will be extremely restricted for the first week at least.

Laparoscopy After Care

I have to wear the DVT stockings until tomorrow, but they are important, because they help to prevent blood clots. Also, no showers for 48 hours after the operation, because the wounds have to heal. I felt pretty minging!

laparoscopy diary day 2

I’m lucky that my boyfriend is so helpful and understanding. He is working from home and bringing me food and drinks – hell, I even have a whistle!

Whistle

One of the difficult things that we might have to talk about is the subject of infertility. Although I have been upset about it, my partner has told me to focus on getting better, and that he loves me. You couldn’t get anyone more supportive than that.

Laparoscopy Diary Day 2 – My Side Effects of Naproxen and Codeine

The worst thing that happened to me so far, was a slight reaction to the pain meds (Naproxen and Codeine). I usually take Ibuprofen and Cocodomol for the pain, but when I asked for this, the nurse said that the other drugs were better. Perhaps I should have explained clearly that new drugs don’t always suit me, but I still wasn’t quite on the planet after the anaesthetic.

Anyway, this evening, I started to feel so nauseous, like I wanted to throw up, but couldn’t. I felt like I was going to faint or pass out. We ended up phoning the duty doctor, who said for me to stop taking the new pain killers.

Drugs have different side effects for different people, and some people don’t suffer side effects at all. But if you think that you may be experiencing similar problems, seek medical advice straight away.

Read my Laparoscopy Diary Day 1 – Day Surgery at Harrogate Hospital

endometriosis

Laparoscopy Diary Day 1 – My Laparoscopy Day Surgery

I was taken to Harrogate hospital today for a Laparoscopy, which is basically putting a camera down your tubes and in your uterus to assess cysts and endometriosis.

York vs Harrogate for Laparoscopy

I’m based in York, but the waiting list there on the NHS was 6 months, compared to a 6 week wait in Harrogate, so I decided to travel a little further to get it done quicker. I’m so glad that I did. Last month, I was in unbearable agony, doubled up and on Cocodomol. I certainly couldn’t wait for diagnosis and treatment until December!

Laparoscopy Day Surgery

Day surgery at Harrogate hospital started at 7.30am. Luckily, I was second on the list. My boyfriend drove me, but had to go home and wait until he was called again (when I was coming round from the anaesthetic).

I was looked after very well at Harrogate District Hospital, and the nurse came in to check my details, followed by the consultant who explained the procedure. It’s a bit horrible when they go through the risks, but the risks with a laparoscopy are very low.

The anaesthetist was very friendly and funny, reassuring me and chatting about holidays when he was putting me to sleep. It was a quick and painless process to have the general anaesthetic.

laparoscopy

050131-F-1936B-008
Doctors Ronald Post (left) and John Smear (center) and Physician’s Assistant Debra Blackshire perform laparoscopic stomach surgery at Langley Air Force Base, Va., on Jan. 31, 2005. The surgery will involve the removal of the gall bladder to help alleviate acid reflux disease. DoD photo by Staff Sgt. Samuel Bendet, U.S. Air Force. (Released)

Waking up from Anaesthetic after my Laparoscopy

Waking up was horrible, because I woke up having an asthma attack, and the nurse didn’t have my inhalers. I had explained that I was asthmatic. but didn’t think to have the inhalers by my bedside during the op – they were locked in my locker. So the nurse went to get it for me which calmed it down. My throat was quite sore because I had tubes down it during surgery.

The worst bit was that I was put on the ward quite quickly. No-one had phoned Sy (my partner) and the consultant came round to me when I was still feeling quite sick and spaced out from the anaesthetic, and Sy wasn’t with me.

The consultant basically showed me photos of my insides completely covered in cysts and told me ‘it’s stage 4 endometriosis – quite severe. It’s too extensive to operate now, and if you want to get pregnant you will need to have IVF. I will be referring you to a specialist in Leeds.’

That was quite a lot to take in when I was on my own and feeling ill. One nice nurse saw that I was really upset after the consultant had been to see me, and she put me in a private room and called Sy to come.

Discharged after Laparoscopy

As long as I could go to the loo and eat and drink, I was allowed to go home. I could do those things, but still felt extremely sick and in pain. But, I guess that if all they are going to do is give me pain killers and food, I would rather have that at home with my laptop and TV!

laparoscopy day 1

I was given a pack of DVT stockings to wear for the next 48 hours (they can also be used on a long haul flight!) The nurse discharged me with several drugs – Paracetamol, Codeine and Naproxen. I usually take Cocodomol and Ibuprofen, but he seemed to think that these were better. ;-S I will see how I go!

I’m going to be blogging a post Laparoscopy diary, but also posting a few articles on tips and info for anyone else going through the same thing.

 

 

 

 

Stages of Endometriosis

Today’s blog focuses on the symptoms of endometriosis and the stages of endometriosis.

How did I know I had Endometriosis?

I suffered from a young age (see my teenage years with endometriosis) with the following symptoms…

  • Extremely painful periods (to the extend that I would need time off school and work).
  • Anxiety and Depression that was related to my monthly cycle.
  • Chronic Pelvic Pain.
  • Trouble going to the loo during periods.
  • Fatigue and Exhaustion.

This went on for many years, with a diagnosis at 24, and a formal diagnosis of stage 4 endometriosis at the age of 36 (confirmed by Laparoscopy).

More recently, I am struggling to come to terms with the infertility that comes with stage 4 endometriosis in many cases.

endometriosis

Stages of Endometriosis

I should include a medical disclaimer here – I’m blogging from a personal perspective to support other women going through the same thing. I’m not a doctor or nurse or any kind of medical specialist.

But, I do know how it feels to live with severe endometriosis, and I have an understanding of the stages than medical professionals use to understand the severity of your condition.

Stage 1 Endometriosis – Minimal – isolated endometrial implants.

Stage 2 Endometriosis – Mild – Mild or Minimal cysts and lesions.

Stage 3 Endometriosis – Moderate cysts, lesions and endometrial implants. Infertility may be an issue.

Stage 4 Endometriosis – Severe, which may involve a high number of chocolate cysts, tissue and implants that may be located throughout the pelvic area including uterus, fallopian tubes, ovaries, bladder, bowels. Infertility is likely and you may be referred for IVF.

stages of endometriosis

Endometriosis and Pain

It is important to understand that every woman is different, and the stage of endometriosis that you are diagnosed with may or may not be related to the extent of your pain.

For example, someone with stage 4 could be in chronic pain with endo, but so could someone with stage 1 or 2, because it depends on the location of the cysts and endometriosis.

Endometriosis and Fertility

Sadly, endometriosis can mean infertility for some women. This depends on the stage of endometriosis and the location. The only real way to confirm an endometriosis diagnosis is via Laparoscopy. If you are diagnosed with stage 3 or 4 endometriosis, you may be referred to a specialist and treatment options will vary depending on whether or not you want to become pregnant.

 

Teenage Years with Endometriosis

I want to start my endo journey from the very beginning, and this basically means tracing right back to my teenage years. I remember that from the time I started my period, I suffered with severe pain at the time of the month, and I suffered so badly with acne, making me a bully magnet.

Endometriosis in My Teenage Years

There were things that were said to me during my teenage years that were tough to get through. I once had an agonising period and bled so much in the gym changing rooms at a time I didn’t expect it (I don’t think I ever knew what regular periods were!) I was sitting on a chair and wouldn’t move, and a girl laughed and said to me ‘It’s going to be going round the school that you’ve shit your pants!’ The teacher sent me straight to the nurse, who sent me home.

I was referred to a dermatologist with my acne, and was going to take Ro-accutane. I was not happy about going on this drug, because of the blood tests, appointments and possible side effects. My dermatologist provided me with a topical lotion, which didn’t really help, as the problem was hormonal.

I recall getting called pizza face, and being accused of not washing properly because of my acne, but I had done every skincare routine in the book and was obsessively keeping clean and trying to look after myself. The hurtful comments were hard to deal with at the time, but now I understand that it just makes you stronger. I can rise above people like that, and know that I don’t stoop so low!

Chronic Pelvic Pain as a Teenager

I went to the doctors on several occasions as a teenager, with chronic pelvic pain and acne linked to my monthly cycle. I felt like I just wasn’t been listened to. One doctor told me to cut my nails so that I didn’t pick at my spots! Another said ‘every girl has periods, just go back to school!’

Going on Hormonal Contraceptives for Endometriosis

My mom argued my case for me at the doctors – I don’t think I was strong enough to at the time. I was convinced that it was just periods, but my mom knew otherwise. She knew what it should be like. And period pain is cramping, it shouldn’t be doubled up on the loo in agony for three days.

I was missing time off school, due to the cramping and the bullying, but still managed to leave with 7 A’s and 3 B’s at GCSE through self study.

So, one doctor put me on the contraceptive pill – Dianette (which is now banned in some European countries due to side effects) At the time, I didn’t really know what the pill was, I just new that it would help to regulate my periods. And it did, temporarily. Now I know that it was just surprising or delaying the problem – the contraceptive pill may help endo, but it is not a cure.

Dianette Contraceptive Pill teenage years

I was just 15 when I was put on the pill. One girl in our class found out that I was on the pill because I forgot to take it in the morning, but remembered at school. She jokingly called me a slag and asked who I was shagging. I’d never even had sex.

Needless to say that my teenage years were not easy. At this time, I did not have a diagnosis. Little did I know that this was just the start of my endo journey.

 

Welcome to my Endo Journey

Welcome to my blog on my end journey. To put you in the picture, I have been suffering with endometriosis since I was about 15. My first surgery and diagnosis was at 24, and now I’m 36 and going through laparoscopic procedures.

cropped-Amy-512-x-512.jpg

Stage Four Endometriosis

My diagnosis is stage four endometriosis, the most severe form. My consultant who did my laparoscopy (camera in your tubes and womb) has confirmed that it is extensive. I kind of knew that, due to how much pain I had been in. It’s been quite debilitating particularly for the last year or two or my life.  I also suffer from other chronic illnesses including asthma, anxiety (linked to hormones and end treatment) and epilepsy (secondary to frontal lobe cavernoma). It’s not the best combination, but I certainly won’t be beaten!

Chronic Endometriosis

If you are suffering with chronic endometriosis, I hope that I can help you by sharing my experiences. I love to live life to the full and am determined not to let endometriosis stop me. Yet, sometimes, the pain can be crippling, and it feels like your life is on hold.

Endometriosis will not Beat Me!

Well, I’m 36 years old and still managing to work (albeit on my laptop!) and travel (see my travel blog Globetrotter Guru). I also try to do some light exercise (including strength training) and control my diet, which can be excellent for endometriosis.

Amy in Blue Lagoon 2

Bathing in the Blue Lagoon, Iceland

Endometriosis Support through my Blog – My Endo Journey

If you suffer from endometriosis, I am here to help and support you, but please remember that I am blogging from a personal perspective, not as a doctor or medical consultant. Every case is different, and although I don’t claim medical expertise on the subject, what I can offer you is an insight into how this has affected my life, and things that have worked for me, that might help you too.

This is a very personal a difficult thing for me to write about openly, so I hope that I will have your support in going public with my story.  Please feel free to comment below and share your experiences too.

Much love,

Amy

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