Thank you Anna Smith

For women with Endometriosis, living life as normally as possible is a struggle. With chronic pain so severe and heavy irregular periods, it is easy for life to get us down.

After I’ve had a sucky time and I am over the initial trauma of an appointment, diagnosis, surgery- I try to find something about it to laugh at. I know I shouldn’t, illness is serious but I regularly use this as a coping mechanism and make light of my illness.

Humour can be as uplifting as opioids if you use it properly.

And so, this is the first of many LOL moments, coming up on my blog. Be assured- I will spare no details, no matter how embarrassing, and hope to hell you don’t judge me. Enjoy

 

Last week, on a grey morning, I woke up with a sad feeling. I was grumpy and just couldn’t brush it off. There’s no point in dressing this up as something else. I was mardy and tired and feeling sorry for myself. So I tried my cure-all, feel better Go-To’s:

  • I had a cup of tea and dunker biscuits in bed- No
  • I watched the original Ghostbusters film (Bill Murray is a sure way to make me smile)- Nope
  • I had a scolding hot bath with a Lush bath bomb, I soaked until I was pruney & short of breath from the steam- Nothing

With a determination I’d not seen in weeks, I got out of the bath and dressed quickly. Trying to put socks on and hold my phone to my ear is not easy and, being clumsy like I am, I stumbled more than once as I waited for my mum to answer her phone.

“Mum, it’s me – Yeah, no, I’m fine – I need you to come get me – Soon, like 10 minutes? – We’re going to town, to King’s – I need to buy a bag.”

As you can see, this needed action. This mood had to do one. And in order for that to happen, I needed a handbag. Needless to say, my mum (being the treasure that she is) dropped everything.

Me and mum went to a local boutique-with-café in my town and I immediately headed for the bag section. Usually, it is chocka with homeware and ornaments- things that I’d break just looking at them. But at this time, the owners were making way for their Christmas stock. That in itself is exciting! It’s like a frigging grotto in their every Christmas, soon be time to put my tree up! This lightened my mood considerably and I’d not set my sights on a single bag yet.

I found one. She’s an Anna Smith tote. I carried her around the shop like a small baby while I browsed. I held her in my lap as I waited for coffee. I paid £42 for her and that is money-well-spent as far as I’m concerned!
There is nothing more satisfying for a bag-lover, than transferring your things out of your old bag and into a new one. Filling all the pockets with my stuff, forgetting that in a month everything will be dumped in and I’ll have to wade through a pile of old receipts and wrappers and leaflets.

Girls, I needed this bag. Not only to make me feel better, but since I now have to take a ton of stuff with me everywhere I go- I need a bigger, hardier bag. Obviously I have all the usual suspects: purse, keys, glasses, pen, notebook, diary, gum, perfume/deodorant. But now that I have the reproductive system with a mind of its own I also have to carry: about 3000 pads, a heat pad, spare knickers, and a small pouch of pain meds (which I’m sure would get me arrested if I was searched by police!)

I can fit all of my baggage into this tote bag. Just call me Mary Poppins.

It can be hard being a girl. But it’s a nightmare being a girl with Endometriosis.

So we deserve handbags. Thank you Anna Smith.

 

Post-op Realness (graphic!)

On 20th September, I had my second laparoscopy.

Since my operation, I haven’t cried. I have tried to be strong, if I lose it- even for a minute, I may never pull my shit back together again. In the past when I’ve cried, like a sneeze, the people around me cry too. This makes me feel guilty. Guilty for making them sad, guilty for making them despair along with me, guilty because there are people in the world in a worst situation than me.

I was re-diagnosed. This time with Stage IV Endometriosis. My entire abdominal cavity was covered in cysts; on my ovaries, uterus, ureter, appendix, bowel, abdominal wall, diaphragm, a lot of Endometriosis, everywhere. I have seen the photographs my Dr took during my surgery. I have seen the physical damage this illness has caused. Now I’m dealing with the emotional damage.

 

Every day since my surgery, I have woken up in pain. At 6:30am, my husband, who has been a never-shaking source of support and strength, fills my hot water bottle and slides it under the covers while I sleep, and then leaves for work. He has been there every step of the way, and although he cannot take the pain away, he has shouldered this burden with me. He’s been there: when I’ve woken him up in the middle of the night, moaning in my sleep as I struggle with pain, he has waited alone in a hospital room- waiting for me to come out of recovery, ever being the calm in the eye of the storm. As I start to panic and become overwhelmed- I look to my husband, hold his gaze and I’m able to breathe again: “We’ve got this.”

Continue reading →

FAQs September 2016

 Why do I get pain during ovulation?

No-one is sure but one theory is that the pain is the egg breaking through the ovary wall, which releases a small amount of fluid or sometimes a small amount of blood that irritates nearby nerves.

What are the stages of Endometriosis?

Stages of Endometriosis describe how severe the Endometriosis is.

xstages-of-endometriosis

Click the diagram above for more info

From left: Stage I, Stage II, Stage III & Stage IV

I have Stage IV Endometriosis.

What is a chocolate cyst?

aka Endometrioma.

Chocolate cysts are a particular type of ovarian cyst linked to endometriosis – these are cysts in the ovaries formed by endometrial tissue (tissue similar to the lining of the uterus). forms dark fluid-filled cavities that can vary in size. The diagnosis of an endometrioma may be suspected based on ultrasound imaging of the pelvis, but the final diagnosis must be based on microscopic examination of the cyst itself.

choc-cyst

Click the diagram for more info

 Where can I contact other women with Endometriosis?

There is an online forum where you can reach out to other women with Endometriosis HERE

What pain meds do I take?

  • Tramadol (standard & prolonged release)
  • Co-Codamol 30/500mg
  • Cyclizine
  • Diclofenac
  • Oramorph

*These are the meds I have, to be taken PRN

NHS or Private medical care?

I have been under a NHS specialist when I had my 1st laparoscopy, and had a ton of hospital admissions.

My new specialist works at a private hospital but does see NHS patients, this is funded by the NHS. During my experience at this private hospital, I have felt supported, listened to, assured that my Dr has my best interests in mind. My husband has also had a surgery done privately and we were both so impressed by the standard of care he received. I appreciate the NHS but if you have the money, or have thought about getting a ‘pay-monthly’ healthcare plan – I’d say it’s definitely worth it.

What is the worst thing about my Endometriosis?

The pain is difficult to manage and I get anxiety when I know my period is due. I worry about being off sick. I worry about disappointing my family and friends by having to cancel plans or for being MIA for weeks.

I don’t care about getting surgical scars on my abdo. I don’t worry about weight gain or weight loss due to hormone treatment.

The worst thing about Endometriosis is that I have to be less than I am. I have to rely on my husband, who takes such good care of me & he’s my rock but he didn’t sign up for this when we first met.

Pain changes a person: I get scared that I’ll change for the worst & my husband will fall out of love with me.

I hate Endometriosis because it literally affects every part of my life.

A small rant about big worries

1 in 10 women have Endometriosis. Around 1.5 million women in the UK are living with Endometriosis. Endometriosis is a chronic condition.

‘Chronic’ is defined as persisting for a long time or constantly recurring. There is no cure for Endometriosis and very limited treatment options:

Hormone treatments such as contraceptive medication (Combined pill, Depo Provera injection, Mirena coil, IUD implant)

Hormone Treatments such as Zoladex, starves the body of oestrogen which places the body in a temporary menopausal state. A lack of oestrogen causes periods to cease altogether. Once the injections are stopped, the ovaries will switch back on and periods return to normal.

These hormone treatments are not appropriate for a woman who is trying to conceive. While she’s trying for a baby, the Endometriosis will run unchecked, causing whatever damage. It could be months before she conceives, meaning months of discomfort/pain.

Another treatment option for women with Endometriosis is pain management. By using a hot water bottle, heating pad or hot bath, pain can be reduced. Mild pain can be treated with paracetamol or ibuprofen. TENS Transcutaneous Electrical Nerve Stimulator machine The electrical pulses are thought to work by either blocking the pain messages as they travel through the nerves or by helping the body produce endorphins which are natural pain-fighters. Some women have stated that Acupuncture has helped relieve their symptoms during a flare up.

Women may be offered the opportunity to have a Laparoscopy, which is a less invasive procedure usually used by doctors to diagnose Endometriosis and also, to treat adhesions and endometrial tissue outside the womb. This procedure provides some relief of symptoms but can recur in time and so some women have to have several of these throughout their lives.

Hysterectomy refers to the removal of a woman’s womb. Oopherectomy is the removal of both ovaries. Both are defined as radical surgeries and are irreversible. If a woman decides on a hysterectomy but opts to keep her ovaries the chance of Endometriosis returning is increased.

These radical surgeries are rarely offered to younger women or women without children. This is because the woman is expected to exhaust every option if wanting a child.

“No gynaecologist will agree to giving your a hysterectomy because you are 25 years old and don’t have any children. There are other things we can try and a hysterectomy is a final option.”

So I can’t get pregnant because I’m in pain all the time, and have Endometriosis. You tell me to consider IVF. Due to pain, I work part-time. I don’t qualify for NHS funding for IVF because my husband has children from a previous marriage. No children, no hysterectomy. So I’m stuck with the pain until I can either afford IVF and conceive or reach an age that is acceptable for me to have a full hysterectomy?

How is this acceptable?

Endometriosis and symptoms in each woman is very different, the efficiency of treatments cannot be measured. There can be no generalised treatment for women with Endometriosis.

Believe it or not- I have had a gynaecologist tell that if I get pregnant it will ‘sort out’ my Endometriosis and pain.

Is it right to pressure a woman into having a baby sooner? Shouldn’t other options be explored?

 When a woman has tried all the pain management options, and the specialist suggests surgery, she will take it, because she trusts the doctor will make the right call.

Is surgery scary? Yes.

Do I have the luxury of being scared? No. I need this surgery because I can’t manage my pain anymore.

Given the ultimatum: Either agree to this treatment (which isn’t guaranteed to work) or suffer with the pain.

Are we compromising our health because there are only limited treatment options?

Endometrial tissue/scarring cannot be seen on an x-ray, ultrasound scan or blood test. Misdiagnosis is often common in a woman’s journey for answers, as symptoms are similar to other health problems. Doctors may end up treating a woman for the wrong illness, e.g. Irritable Bowel Syndrome. There is no way of identifying Endometriosis without laparoscopy. So without this surgery, without the correct diagnosis, a woman could experience years of suffering with pain, heavy periods, fatigue etc.

Although, doctors bear in mind that if the mother has endometriosis, it is likely for the daughter to have it also- it can be hereditary.

10 things you’ll know if you live with Endometriosis

  1. It’s OK to send your spouse on an emergency trip to the chemist, at 11pm.
  2. No, it’s not an alien. It’s just a clot.
  3. It’s OK to eat comfort food and chocolatey treats & not care about weight gain.
  4. You can’t explain your clingy, needy, hormonal outbursts- it’s just another Endo Symptom! 
  5. You will change your outlook on life: “Life’s too short…”
  6. You will get into the habit of picking up Paracetamol & Ibuprofen in every grocery shop.
  7. You will get to know your cycle & body really well, you’ll probs have an app that sings a song when you’re ovulating!
  8. You’ll become the go-to wizard when your female friends have a ‘lady garden’ problem.
  9. Get comfortable talking about ‘awkward’ subjects like: periods, sex, cervical fluid.
  10. Smears/internal examinations don’t get any easier! Despite 100 Drs having a butcher’s at your VJ.

 

*Bonus 11.

It will become obvious that people don’t understand what CHRONIC’ means.

“get well soon” or “oh, you still have that?” or “you don’t look sick”

These comments don’t apply to a chronic condition. I will always have Endometriosis. There is no magic pill. Endometriosis is life altering.

 

BUT WATCH ME KICK-ASS ANYWAY

Side effects of my Chronic illness

  • Spontaneity goes out of the window.
  • There are 84 days out of the year in which I am guaranteed severe pain.
  • Being unable to work full time hours due to chronic fatigue. Having to work part time has a negative impact on my finances. I have had to leave jobs because of my illness, either because I’ve had a lot of time off or that I am physically unable to do the job.
  • I have learnt to accept change.
  • It takes a lot to accept the restrictions caused by my chronic illness.
  • I have received several labels since my Endometriosis became a serious problem- lazy, drug-seeker, attention-seeker, depressive, unreliable. Having to deal with peoples’ prejudices.
  • I know my body.
  • I can’t eat certain foods – it’s great trying to figure out which ones are OK.
  • I get anxiety waiting for my period to start.
  • I am dependent on my husband a lot of the time.
  • I act like a drunk fool when I have to take strong pain relief.
  • Being pushed into contraceptive / hormonal / surgical treatments or deal with the pain.
  • Being pressured to have a baby sooner due to the threat of infertility.
  • Losing friends: There are limits to a person’s willingness to understand.
  • Acknowledging the link between depression & chronic pain.
  • Strain on relationships: spouse, family, friends.
  • Guilt & disappointment.
  • I’ve gotten really good at hiding how I feel, pushing it to the back & concealing my pain.
  • I know my Drs, nurses, A&E staff really well- continuity of care 100%
  • There are times when I hate my body.

fku

Zoladex vs Endometriosis

On 20th November 2015 I had the first of my Zoladex injections to help relieve the symptoms of Endometriosis. I look at this as the final straw. The last option to my growing list of failed attempts to control pain, manage my symptoms.

“Zoladex (goserelin) is a man-made form of a hormone that regulates many processes in the body. Goserelin overstimulates the body’s own production of certain hormones, which causes that production to shut down temporarily.”

Less than a week later I go through a bad flare-up, extreme cramping, agonising pain and bloating. Having to take all my strongest pain medication and struggling to stand. I literally didn’t know what to do with myself, I was having to take heavy pain killers along with sticking heat pads all over my abdomen and back. However, I was told later that this was “normal” and is called a ‘post-zoladex bleed’. This can sometimes exaggerate the symptoms of endometriosis. I was also told that this settled down after a while…

And it did. The first month came and went, I was just heading into the second month, second injection, when the hot flushes started. As the injection works, it imitates menopause. The zoladex injection is like a chemical menopause, shutting my ovaries down so the endometriosis cannot grow or fluctuate in any way – hence, no pain. Or that is the idea.
For a couple of years now I have been listening to my mum (who is mid-menopausal FYI) whine about hot sweats and lack of sleep and mood swings, each time earning an eye-roll from me. I will NEVER roll my eyes at my mother again. EVER.
These hot sweats come and go all day, and they are ferocious and spontaneous. I wake up in the middle of the night feeling as though my blood is boiling beneath my skin. That awful feeling when you get stuck in a jumper that’s too tight? (I felt it briefly last year when I found myself, regretfully, stuck in a dress) I feel that for a split second, when waking with a hot sweat, feels a though I’m suffocating as I’m much too hot.

This is still happening to me. But it’s the lesser of two evils I suppose. Volatile body temperature or constant pain?

So I’m 2 thirds of the way into my course of 3 Zoladex injections. My last one was 18th December; each one isn’t as bad as the last. Although I’m left bleeding, sore and bruised after every injection, it doesn’t hurt as much. I figure I’m used to being a human pin cushion. I haven’t had a period in nearly 3 months now, I’ve had very little bloating and a minimal amount of pain. The only complaint I have are the side effects of the injection.

This tells me that the ultimate treatment, the only thing that can really help me (in the long room) is a hysterectomy. A hysterectomy will push me into early menopause, effectively doing exactly what the zoladex injection does and is a more long-term plan. I’ve finally found something that seems to work. But before I commit to menopause permanently…

 

…2016 is my ‘HAVE-A-BABY Year’

 

Happy New Year!!

 

A xo

 

*I’d love to hear about the treatment you’ve used for Endometriosis… comment below

*Any ideas to naturally boost fertility?

 

An Apology.

Being the partner of someone who suffers with Endometriosis is hard. It’s hard to see the person you love go through so much, seeing them in pain constantly and feeling helpless. It’s difficult to watch her lose a part of herself each month as pain wracks her body or hormones warp her spirit, turning her into someone she’s not.

I can only guess how hard it is, I can’t imagine what my husband has thought or felt during this last year; pre-diagnosis and post. I’m just thankful he’s been with me.

Over the past several months, I have not been myself. I have not been the woman he fell in love with. You might say ‘it can’t be helped, you’ve been through a lot’ which is true in a lot of ways. But why should he have to suffer someone he no longer knows?

Pain turns people into a shadow of the person they were without it. Pain takes hold and destroys the spirit like a cancer destroys the body. A person can only take so much before they give up to despair. Luckily my husband has stood by me through it all.

I have had the Depo Provera injection. This will be the third week after my first dose. My doctor told me it would help with the pain. It has a little. But it’s something else that’s worrying me. The Depo Provera injection says ‘Mood Changes’ on the side effects list. Understatement. They say hormones are a big part of distinguishing who you are. Hormones have a strong relationship with emotions. And being someone who is madly driven by emotion- this has had a huge effect. I’m not making excuses, I’m just trying to understand.

My thoughts are darker, I’m moodier and I have mood swings so bad I feel like I might have whiplash. I have just started a new job which is causing me to concentrate and has taken its toll on my brain which has been on sick leave since December. I’m tired, my husband is tired. I don’t find his jokes as much fun as I used to. The little patience I did have has all but expired. This has started to affect my marriage. I’m pretty sure my husband, family and friends have noticed.

I’m trying my best to be me, it’s hard. But I’m just asking for time and patience and a little understanding. Like people say ‘anything worth having is never easy.’ I thank you for your patience.

But in the meantime, I apologise wholeheartedly for being a bitch.

Sorry.

A xo

Endo-what?

“You don’t look sick!”

“It can’t be that bad surely,”

“It’s just woman problems.”

“Have you tried Paracetamol?”

“I know what you mean..”

Well in my world, if you’re not me, you can’t possibly know what I mean at all. For 6 months I have suffered with an agonising pain that appeared like clockwork every month. Tell me, do you know how hard it is to try to be optimistic when you know to expect the worst? As I said, probably not.

Opening your eyes in a morning with a pain so severe you can’t even sit up. You can’t even walk, having to crawl into the bathroom to throw up, having to lie there on the cold tiled floor whilst the bath fills slowly with scolding hot water. Having your abdomen covered, front and back, with heat-pads just to try and find some relief.
And worse, having to contact your employer and tell them you can’t go into work today as you’ve got really bad pains, “period pain”, trying to make them understand just how bad it is. Willing them to understand, thanking god when they do because you know there’s no way you could possibly make it into work without fainting and vomiting. Calling your boyfriend before he finishes work to make an emergency stop at the all night chemist for Tampax because you’ve almost used a full box in a day or so. Losing clots of blood the size of 50p coins, feeling so exhausted you think you might never move again. Asking your partner to carry you, put you to bed, rub your back, listen to you cry and scream in pain; then watching the hopeless, helpless look on his face as he tries to look after you the very best he can.

It’s funny really, I can’t actually explain to you what the pain feels like. When I try and think back to how it’s been the month before, it’s like I’ve blocked it out. All I can say is, when I think about having to go through that pain again this month, I feel a gut-wrenching fear that brings me to the edge of tears. I cannot do it again. And yet, it comes and I do and a month later I find myself back in the same situation.

Endometriosis. For those of you who aren’t aware of what it is (and there are a few, I was one!) It’s an illness where endometrial tissue is found outside of the womb. It causes excruciating pain, infertility, chronic fatigue, and in some cases; financial problems and relationship breakdown.
There is no cure. It’s average diagnosis time is 7 years; from first appearance of symptoms to diagnosis. That is not good. Understatement. Women are struggling all over the world, visiting their GP, being rushed to hospital, being admitted to hospital, trying to get help. To be in pain is the worst feeling in the world, worsened by the fact that you feel alone and unable to get help.

I have had 3 hospital admissions since August 2014 and several out of hours doctors appointments. I have struggled since February 2014 when my gynaecologist decided it was unlikely I had endometriosis and decided not to send me for the diagnostic laparoscopy. This man I met again on my 3rd hospital admission, he waltzed on to the ward and I felt an impending sense of despair. He had no idea who I was, or that he’d seen me before, he then told me he was sending for (another) scan and that the pain could be due to a water infection or I could be constipated or appendicitis – all that I’d heard before. The frustration I felt at the moment was strong enough that it could have lifted me off of the bed. He informed me after checking the scan that he would just help manage the pain as I was booked in for surgery in January 2015.

A week after I was discharged, 20th December, I married the love of my life. I only just made it down the aisle.

I mentally prepared myself for surgery, thinking positive despite several doctors telling me not to pin my hopes on the operation as they might not be able to find a cause of the pain. That in itself is a frightening thing. If they can’t find anything, I’ll just be left to deal with this every month by myself. Surely I wouldn’t have all this pain for no reason? But doctors assured me this could be possible; “some women just suffer more harshly than others with period pains.”

So I went under. I can’t tell you how long I was in surgery for, it felt like I’d only blinked. But the moment I opened my eyes, I was in agony. The nurse pumped me full of Morphine and Tramadol as I tried to listen to my consultant explain he had found severe endometriosis. That my ovaries had been fused to my pelvis. That if I wanted children, to have them sooner rather than later as my fertility would only decrease as I get older (but hey! there’s always IVF), and that an hysterectomy would be the final decision but was hopefully years and years away.
I can tell you, the relief that he’d found something, found an answer when I’d had none for months, I’ll admit I cried. And I have cried a lot since my surgery over 2 weeks ago. I’m still sore and I’m still learning what I can do to help myself and what options are.
But the first thing I realised, it’s not all hopeless. There are success stories. There are alot of women I have come to know that are surviving with endometriosis; brave, strong women. Most have been surviving a lot longer than I have, years they have endured such agony. All smiling on the outside, while suffering awful pain on the inside. I salute you ladies! You inspire me to look to the future with a positivity I didn’t have before Christmas, pre-op.

I debated whether or not to write this entry. Thinking it might be too much, it might not apply to everyone, maybe it does, maybe it doesn’t, but this is how endometriosis has affected me and my life. I hope whoever reads this has had a better time, or that this can help you understand and appreciate what I’ve been through.

My name is Aimée, I’m 24, married and I’m surviving with chronic endometriosis. There I said it.

xo

Deep breath! aaaand let’s smile. These have made me smile:

George Michael – Faith —    https://www.youtube.com/watch?v=29GWMT0GB6s
Olly Murs Ft Demi Lovato – Up —      https://www.youtube.com/watch?v=6Cs3Pvmmv0E
Jimmy Fallon’s lip sync battle with Will Ferrell & Kevin Hart —
Bruno Mars & Mark Ronson – Uptown Funk —   https://www.youtube.com/watch?v=OPf0YbXqDm0
Ed Sheeran – Thinking out Loud —     https://www.youtube.com/watch?v=lp-EO5I60KA