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Showing posts with label endometriosis. Show all posts
Showing posts with label endometriosis. Show all posts

Thursday, 2 October 2014

Filling the womb space...

but you are not defined by a part of your body...

I read about this recently when looking at the forums for women who have had a hysterectomy and feel a sense of loss after surgery. I really understand this complexity, don't get me wrong, but women are more than just a uterus, we are living, breathing organic beautiful beings capable of being much more than the sum of our parts. Even women with healthy functioning wombs are often unable to conceive or have children so living without a womb needn't prevent you living a full life.

I suppose the closest I have come to the grieving process (and hormones play a large part in this) was after the final meeting with my lovely gynaecologist, who I still have a major crush on (for the record, he is strictly professional). I'm notoriously bad at letting go so any perceived ending or closure is very difficult for me. However, from the recognition that I was going through a process I could deal with it and look at it in a more positive role. 

Positive thoughts include:


  • I am getting fitter every day
  • My hot flushes have ceased completely
  • I'm driving long distances again
  • I can work 
  • I'm following my dream of becoming a full-time writer by doing an MA in Creative Writing.
  • I don't have debilitating, exhausting periods anymore! Hooray!
So, wherever you are in your story, believe me, it does get better. I am now 3 months post-op having had a TAH with a cut ureter so extra surgery was needed, catheter and stent during the 6 weeks following surgery - pain, discomfort, limited mobility, fatigue etc etc. 

Today I had a CT scan of my pelvis which is  a painless procedure and I have a follow up appointment in December with the urology consultant. The strangest thing today was being asked when my last period was (they need to check before a CT scan in case of pregnancy) and I cheerfully stated that I'd had a hysterectomy on the 4th July. It made me realise I'm not ruled by the cyclical symptoms that harangued me for most of my life and I'm focusing on filling my womb space with creativity and joy.







Thursday, 18 September 2014

"Parting is such sweet sorrow..."

wrote some famous geezer once upon a time...

...and how right he is. Sorrow rises up to meet me. This is potentially the last time I will see Mr F, my lovely gynae consultant unless by some quirk of kismet we meet in Qatar! He is leaving me for the desert!

My follow up appointment has a sense of an ending, it is a closing of a chapter as I continue to heal yet I have been through such an intense process with this exceptional man, the connection is inevitable. 

Don't all women fall in love with their gynaecologist?!

So I leave the hospital with renewed hope that my body, now rid from endometriosis and the organ that produced it, is finally going to allow me to be as free & vibrant as my thoughts. Yet the loss prompted by this change overwhelms me and I spend the evening silently weeping; perhaps this surfacing melancholy is a sort of relief overflow from the effects of surgery and the energetic links that are created.

My osteo recently remarked that it is as if all my whole life has been leading up to this point, the start of wellness and a clearing of karma through intense pain and suffering. The shamanic tradition marks this as the 'wounded healer' archetype, and through experiencing this descent into the abyss of illness the young initiate will re-emerge into the world with vital information to share with others. 

"So, I thank you Mr F with all my heart for your commitment to me over the past two years, you have touched me way beyond the physical and above all you were the one that really heard me. I will never forget that."


And who could have predicted that my final gynaecology appointment would involve the mention of camels! 

Perhaps Mr F will be true to his word and bring me back a camel from Qatar.......however, I'll settle for diamonds!

Here is a photo of me on 'Skyjuice' the camel in Jordan.



Thursday, 4 September 2014

Butterflies and the process of transformation

Butterflies teach us how to transform...

We can learn from creatures that transform drastically throughout their life cycle and a prime example of this is the butterfly. I have always been drawn to their subtle complexity, a life lived in apparent frailty but disguising great strength. I meet the owner of the Butterfly House and he shows me a Gold Rim Swallowtail caterpillar, it it black and bulbous with red spikes, and secretes a wax-like substance when under threat! I am reminded of the way my body oozed and expelled liquids post-op, something no-one ever discusses in conversation. The processes we go through when healing can be regarded as disgusting or they can be looked upon as a necessary part of transformation. As a butterfly.

The chrysalises hang apparently dormant in their cupboard at the back of the Butterfly House, they dance as if celebrating their imminent emergence into a new life. I spoke to many women before I had my hysterectomy and heard their experience of it, all of them said they didn't regret it and it was the best thing they'd ever done. I maintain that view also regardless of the complications that arose during my surgery and the pain I endured. I am grateful to those professionals who helped me to combat endometriosis, a debilitating and life-changing disease. I felt hysterectomy was the only option left to me if I was to lead a happy and fulfilling life.

I will leave you with a photo of the Tree Nymph butterfly, a gloriously large creature that flies as if it is tissue paper swimming on the breeze.


Sunday, 31 August 2014

Channelling the Fire Goddess...

We seek that which is lacking within us...

This is something I have learned in my experience so far and the synchronicity of healing and the paths we are steered upon. I had been buzzing about like a headless mosquito for too long, ignoring the pools of sustenance that lay before me; my life as a writer was waiting dormant in those pools until I had the courage to immerse.

My passion has always been reading and writing, I live for it so this period of convalescence has allowed me to be still like a great lake, breathing and adapting to its change of season. Summer has supported me well this year, the element of fire has complemented my earthly grounding, the irony of a cut ureter marking the water element in my chart and the gentle breeze of words rustling through my head as I read and read and read.

I keep getting hot flashes that rise up through my upper body and head, it could be the hormonal surges but may also be my body cleansing itself. It is not unpleasant and I prefer to call it 'channelling the fire goddess' - a much more positive take on the menopausal bad press of 'hot flushes'.

I have used sage tablets to calm the fiery goddess from getting out of control. Sage comes from the word salvere which means to be saved. So to all you glorious women out there who are channelling the fire goddess I wish you the silvery cool leaves of sage.






Friday, 29 August 2014

Doing too much...

Pain in the neck?

My neck and shoulder ache is in response to my body getting back into alignment after so much contraction and concentration on my pelvic area. I can only describe this as a feeling of being pulled in at the middle by a tight elastic belt, it is uncomfortable and needs gentle easing rather than a sharp pull which would only snap. After all the pain I have endured over the years with endometriosis I find that the worst feeling is having pain in the neck or head area and being unable to get comfortable or think straight. 

When I do eventually get to sleep I sink so deeply that when I wake I feel paralysed by my inactive muscles as if they have petrified like a fossil. My dreams are crazy-vivid, full of people demanding me to be in control, to make decisions. In one I call an ambulance for a man who has a wooden stake through his right femur, it's dark and the door to the house is extraordinarily narrow. Then the ambulance drives past, missing the address and gets waylaid assisting a bunch of drunk men, I'm frantically trying to get their attention to assist a much more worthy patient and to hurry.

I have been having Cranial Osteopathy and my Osteo feels I'm doing too much, straining my body with too much action, yet I feel so lazy for sitting still, for gentle movement. This is a western trait in the glorification of  busy, why do we reward the process of accumulation, achievement by the amount we have amassed and how much we fit in to our daily lives. The aggrandisement of frantic living is definitely not for me, so just as well I live in a sleepy part of the countryside and can sink into the gentle pace that is so much more beneficial.



I need to reign it in and rest, rest, rest. 



Friday, 22 August 2014

Sleep Deprivation

A woman without sleep is a shell...

You can tell a person who does not sleep well, their eyes are glazed and they have a demeanor that leaks energy, that is because sleep is so important, there are myriad studies on the benefits of sleep, especially following an illness or in my case, surgery.

Having been what I term a 'good' sleeper most of my life, I find lack of sleep or poor quality sleep most frustrating, affecting not only my physical body but my mental faculties and most importantly for those around me, my mood. The restrictions of abdominal surgery mean that certain positions are uncomfortable, and lying on my back is not my preferred position for sleeping; I am a curled cat, a foetal sleeper. I miss sleeping on my side.

Now, I am 7 weeks post-op but I've only really been active over the past two weeks and only pain-free for 1 week following the removal of the stent from my ureter.

My strategies for getting to sleep include the following (no sheep were involved in the counting):

  • Listening to mantras
  • Breathing slowly and deeply
  • Counting down from 100
  • Listing all the states of the USA in alphabetical order
  • Numbering the alphabet e.g. Z=26
  • Trying to remember the Capital Cities of Europe
  • Pulling my hair out!
  • Trying to lie really, really still


Thursday, 21 August 2014

'You are the doctor too...'

Have you got that jittery feeling?

Yeah, me too! Time has passed by so quickly over July and August perhaps because I'm willing my body to heal and function better than before I went in for my op. Yesterday proved how time is still needed and healing processes cannot be rushed even when  your head is telling you, 'get on with it'. I still feel a long way off from 'normal'.

Yesterday I took a trip out to a garden centre, ate lunch on a particularly uncomfortable chair, walked around a bit and felt bone tired and in need of rest after. I felt my demons surfacing, the usual self-loathing for not being as healthy as I want to be but a pep-talk by my partner helped. I am the only one putting pressure on me, no-one else is. I've allowed myself so far to surrender to the process and it really helps having a philosophical outlook. Talking really does help sometimes or you just let all the monsters sabotage your own unique way of approaching what your body is telling you.

If you start all actions with creativity then you will succeed. I start with nothing but that, it is a burning hole in me, the fuel that expunges the words from my soul. The poet, Rainer Maria Rilke, speaks to Franz Kappus about such a feeling advising him to:

"...remember that sickness is the means by which an organism frees itself of foreign matter; so one must just help it to be sick, to have its whole sickness and break out with it;...you must be patient as a sick man and confident as a convalescent;...you are the doctor too, who has to watch over himself. But there are many days when the doctor can do nothing but wait."

So I wait...settling into my solitude...


Tuesday, 19 August 2014

Drug free cinematography...

After the Stent...

I woke the day after having the ureteric stent removed with renewed energy and thankfully no nasty bits coming out when I wee. I can't believe the transformation from having it removed, which is likely to have been causing me all this discomfort over the past 6 weeks.

I feel now I can really concentrate on getting my body healed and well again without the restriction I've been feeling. I did a short walk to the local garage and back, very slowly but it was enough for one day. I knew when I'd done too much moving about the house as my abdomen gets really achy so I spent the afternoon watching TV. I'm at that stage of recovery where my mind races ahead of my body and I need to be mindful and take care. 

I have not received a follow up from my gynecologist yet and feel I've been overlooked by the system. This is not unusual apparently and it is worth taking control of your own healing administration, chasing appointments etc. (I am in the UK so this maybe different if you are reading from other countries). I have been disappointed with the lack of follow up following discharge from hospital when I was reassured that all the appointments would be made for me and I'd be notified by post. A phonecall in the early weeks would have been really helpful to talk with a nurse who understood about the recovery process just for reassurance if nothing else. I had no idea that a stent could produce such uncomfortable symptoms.

As well as reading I have watched the following films:

  • 12 Years a Slave
  • This is Martin Bonner
  • American Hustle
  • Blue Jasmine
  • Inside Llewyn Davis
  • August: Osage County
  • The Counselor
  • Now Voyager
  • Back to the Future (1 & 2)
  • The Italian Job (1969 original)
I'm partial to a Lamborghini-driving older man with his shirt sleeves rolled up - anyone?????


Saturday, 16 August 2014

SOD (Stent Out Day)

Stent Out Day....

I feel ok about this 'procedure' as they call it as I've been feeling quite fed-up at 6 weeks post-op with nowhere near the levels of energy that I need to partake in normal activities. I still feel incredibly bruised in my abdomen and am probably being too impatient as it wasn't just a hysterectomy but the added complications of endometriosis and then my ureter being damaged.

Having the stent is causing me some discomfort almost daily, it a low ache that reaches up my side and is worse just after peeing. Right now I can't entertain walking for miles; climbing a hill; lying on the grass; sleeping in a tent; soaking in a bubble bath; doing yoga; flying round the world; belly dancing; doing a pilgrimage; all these things I want to do desperately but can't. 

So, the stent was apparently 30cm in length and is finally out of my body and it only took a few minutes in which the doctor placed a camera up through my lady bits to retrieve the stent from my bladder, ureter and right kidney. It was uncomfortable but I had no anaesthetic and I think I must have incredible high pain threshold due to years of living with endometriosis.




My bladder was really irritated afterwards and I had the urge to urinate for several hours which is not pleasant as you get to the toilet then nothing comes out. You know how it is if you've ever had a bladder infection (something I thankfully never had to endure).

I take more arnica homeopathic remedy when I get home to help the healing process. Joy of joys, I suddenly realise that after 6 weeks of intense trauma on my body I'm now totally organic again with no 'foreign matter' in or attached to me.

Monday, 11 August 2014

My post-op reading list...

"There is no time for boredom"...

I have used my healing time also as a time to read, which is a great use of time. Here is a list of books I have read:


Life After Life - by Kate Atkinson
Perfect - by Rachel Joyce
One Hundred Years of Solitude - by Gabriel Garcia Marquez
Pride and Prejudice - by Jane Austen
The Great Gatsby - by F. Scott Fitzgerald
The Letter in the Bottle - by Karen Leibrich
Case Histories - by Kate Atkinson
A Cat, a Hat and a Piece of String - Joanne Harris
The Lover - by Marguerite Duras
The Luminaries - by Elinor Catton


Sunday, 10 August 2014

Don't over do it...

That's all I have to say on the matter....

Appearances can be deceptive when you are healing. I look well but I know my insides have a long way to go before they are fully healed. It is 5 weeks since the hysterectomy and I still have the stent inside me which is not pleasant, so there is still shock and trauma held at a deep level.

It is dry yet breezy today and if I'd have been well I would've been at our local village's Harvest Home celebration. This is a rural event upheld in small communities around the area I live in, dating back over 100 years. The usual characters all partake in these events including a big meal of local meats, salads and trifles followed by speeches then later an afternoon tea, games and a live band in the evening. All held in a large marquee in the middle of a field. 

I can almost smell the chunks of fresh bread, cubes of cheese, pickles and condiments mixed with the soft, country smell of the grass underfoot. Flowers dotted along the long trestle tables and the bustle of the feast as people consume jugs of ale and cider.

But as I said, there is no way my body could cope with that so I rest. And wait.

Thursday, 7 August 2014

Turn your negative into positive...

Bio-oil and arnica cream...

after showering each morning I have my routine of putting arnica oil on my bruises (yes I still have them!) and then some bio-oil on the incision scar. I still feel very swollen and tender although I am progressing each day so trust in the process of time.

I've been having a bad time sleeping with the position I have to lie in, I cannot lie on my sides as it pulls too much on my belly so lying on my back is not ideal and causes my legs to become restless.

My mum comes to take me out as it is a glorious day, warm with sunshine so we sit outside at the garden centre. I feel quite lightheaded walking about and I'm SO SLOW even the old women with trolleys overtake me!

Tiredness overtakes me too, even the slightest activity leaves me knackered but I'm thankful for all the help I'm getting so far.

Wednesday, 6 August 2014

Holistic Treatments to help after hysterectomy...

Choose a holistic treatment to aid your recovery...

If you feel anything like me after having surgery you will want tender, loving care and not a full on massage which can probably be detrimental anyway if you are still bruised inside and sore outside too.

Some gentle treatments that can really help include reflexology and you can find one near to you via:


I am lucky enough to know therapists in my area who practice many different types of therapy so have found homeopathy, reflexology, cranial osteopathy and acupuncture all widely available and very effective at getting me back on track.

My homeopath has prescribed me:

Staphysagria - for post-surgical pain. read about it

Arnica - for bruising and trauma. read about it

Thuja - a fascinating remedy that taps into the divine feminine - read about it

Today I had my first cranial osteopathic treatment with one of the best practitioners I know. This is not to be confused with conventional click and clunk osteopathy that realigns the bones and joints and ligaments but a more gentle intuitive type of therapy. I have found it most effective in dealing with the excruciating symptoms of endometriosis in the past, especially chronic pelvic and back pain. If you are responsive to subtle, gentle approaches I'd really recommend finding a good cranial osteo and have some treatments. I find myself just wanting to sleep very deeply afterwards which seems to be my body's way of realigning itself, like a mini-hibernation.

Here is a link to my fabulous osteo

Be kind to yourself - treat yourself as you would a thing that you love most


Friday, 1 August 2014

Stent Irritation

You cannot see inside your body...

but you can certainly feel it. I have never been very good with non-organic stuff and the stent sitting in my ureter latched between my kidney and my bladder is a prime example.

I had been considering the stages of healing following my hysterectomy knowing that it was not quite as straightforward as I anticipated due to the cut ureter and it's own healing process. Each day I felt less tired but it would creep up on me like the weather beside a British coastline, one moment the sun was out and then a bank of grey would loom over the horizon of my body. Tiredness creeps, it doesn't hit you like pain or emotion, it is a creature that leeches you like a parasite. 

After I wee my right side aches as if someone is drawing a sharp line with a blunt magnet, the tiny trickle is followed by a hot flash up my face and neck - this could be hormones or the elimination of drugs still working through my system.

Drinking only water helps - lots of it, to flush through and reduce the challenges my body is facing.

I keep to my mantra and listen daily to Deva Premal:

deva premal - listen

Thursday, 31 July 2014

POCT or Post-Op Commentary Talking

Talking to yourself is absolutely normal....

Today has been a real test of my energy level management - I love my friends but have found that talking and being present with them has left me floored for some time afterwards. I feel it's the actual process of concentration and being alert, plus being limited at movement prevents me to get up and play hostess.

My rational mind tells me I mustn't over-do it or I could set my self back so I talk to myself - a skill I learned on a workshop once called commentary-driving, only I call this Post-Op Commentary Talking. 

It goes something like this:

"I am now going to gently ease myself out of this chair and stand up. Now I am mindfully going to walk to the kitchen to fetch a glass of water. Oh look, there is a pair of shoes that have been carelessly left in the middle of the room but because I cannot bend down I will not attempt to move them but register that they are in my pathway causing me to navigate around them and not trip up and land flat on my face..."

Talking of limitations, obviously I'm aware that I can't hang out of upstairs windows to wash off the seagull shit so I ask my extremely keen to please partner to do it, as it is impeding my view of the clouds! (Actually he wasn't that keen - who would be?)

Going off on a tangent, can I recommend fruit to you. It's blooming marvellous considering nearly two weeks ago I was almost passing out on the toilet with 8/10 pain, this has reduced to 3/10 discomfort so 'well done body' - remember with POCT you can actually tell your body how well it's doing at healing.

Now for a fruit salad...


Thursday, 24 July 2014

Aren't showers blooming marvellous...

I feel clean clean clean clean.....

Hooray, hooray the catheter came out today nearly three weeks since surgery. Goodbye plastic friend who gathered my urine day in day out, I will not miss you one bit.

I cannot tell you how much freedom I feel and it really wasn't that painful (men make a bit of a fuss apparently due to the longer length - these were the nurses words not mine). I quaffed a jug of cold water and managed to pee exceptionally clear urine - twice - had an ultrasound and was told there was a little teaspoon left in there but it all looked fine.

The nurse also kindly looked at my scar which was clean and hadn't bled for 4 days so advised to leave the dressing off. So I did. Thanks nurse. What I didn't envisage was needing a wee so quickly after leaving the hospital so spend most of the journey home in agonies and had to rush (well shuffle at a quicker pace) up the stairs as soon as I got home.

Joy of joys I love to shower, it is so refreshing to feel clean running water wash away all the detritus associated with recovery.

The weather has been hot and dry so I can lounge around drying naturally and letting my body use the balmy air to soothe it. Summer is my favourite season, the light and heat a natural remedy. My pet cat is being careful and affectionate, using his innate intelligence to sense that something is not quite right with me.

Monday, 21 July 2014

Checking the wound

I have come to terms with changing my own dressings and taken control...

I feel well in my head, I'm eating nutritious food, drinking lots of water, the pain of bowel movements is getting less and less each day although probably still 6/10 pain factor which is not something I want to get used to.

So the latest challenge is my abdominal scar bleed which happened Friday night and following a check-up at A&E I had the option of changing my dressings at home or waiting to see the doctor/nurse. I wouldn't mind coping with these sorts of changes if I actually knew what to expect or how to respond. So far I've had no follow up since my discharge from hospital and feel quite narked at not even getting a phone call. When I had my laparoscopy last year somebody phoned a few days after I was home to check how I was and this is far more extensive surgery.

Yesterday I woke at 4.30am to the dawn chorus so lay about ruminating my dreams - I was in Venice in a piazza with my parents and I divert to a path to meet a friend who is with 5 kids, two are hers and three of them are ugly and blind and I'm unsure why they are meeting me here when I just want to sight-see!

 I change my blood soaked dressing laying out the gauze swabs and adhesive dressings alongside the saline solution (made from Cornish sea salt and hot water!) I used to faint at the sight of my own blood but this just makes me feel like I have a job to do, licking my wounds I suppose. There is a little gap in the incision where the dark blood is oozing out but it doesn't look infected and I have embraced my body's cleansing function with stoicism. I need to find out how long it will bleed, if this is normal and don't seem to get any definite answers from the GP or the consultant's secretary who says I must get a referral from my GP to see him. To be honest I don't have the energy to push for appointments so I don't.

Later in the day I feel a loss of faith in my healing ability, yet I'm hard on myself more than others, I've never felt so bashed about in my life. I'm trying to be more objective and less self-focused.

Cloud scrying is a good way of getting out of your body, if there are clouds you can see from where you are. It is a way of finding shapes or images in the clouds, I saw a bearded Neptune and a lemur! My brain is working well then!

Saturday, 19 July 2014

Anybody out there???

How many women feel abandoned after hysterectomy...here are some support options where you can join forums and chat to other women who share their experiences:







Thursday, 17 July 2014

Almost everything hurts except my fingers...

I am acutely aware of all of my bodily functions right now....never ever take them for granted...

It is useful to remember that even though everything hurts it is hurting for a reason, to make you be still and heal.



Monday, 14 July 2014

It started with a cyst...

I'm reminiscing about the initial diagnosis and urging all women out there to not be fobbed off by their GP, you know your body and if it doesn't feel right get it checked out....

It started with a cyst, on my right ovary, called an endometrioma. Following what was probably years of mis-diagnosis I had endured frequent comments from various GP's (both male and female) saying:

"every woman gets heavy painful periods from time to time"

"it's just something women have to put up with"

"backache is a normal part of life - nearly everyone has an episode of pain once during their lifetime"

"have you tried taking painkillers?" ???????????????

"I'm going to prescribe you....mefenemic acid....the pill.....the depo injection.. the mirena coil is a great preventative measure...how about a hot water bottle...!!!!!!!blah blah blah"

I lost count of how many days I had off school due to heavy periods, leaking blood everywhere, feeling as if my insides were going to explode, bending in half and crawling on the floor with excruciating pain, fainting and feeling lethargic most of the time. Not to mention my studies being affected by lack of concentration and my mental state being eroded by beliefs that it was "all in my head" and something all women have to endure for most of their life. When I tentatively discussed this with my peers they looked at me blankly as if I was exaggerating about the pain so in the end I just said nothing.

I missed social events and work commitments for fear of needing a toilet in case I was bleeding heavily, or not feeling well enough with such low energy I just wanted to lie down. When you live with something for so long it becomes a part of you and you begin to accept it as normal, yet the messiness, the inconvenience and embarrassment of having to make excuses not to do something is NOT normal.

It was only due to a very diligent and compassionate doctor who actually listened to me and suspected I might have a cyst that I was sent me for routine scan. I was not expecting anything to show up so was surprised when the nurse said you have what looks like a cyst on your right ovary, we'll send details of an appointment...then came the first diagnosis of endometriosis at the age of 37....

So I have no regrets about the decision I made to have surgery to remove those parts that caused me nothing but trouble. I only wish it was a more straightforward operation without the added complication of having a cut ureter and endometriosis.