beingendo

Living & coping with endometriosis.

Types of Hysterectomy.

Types of hysterectomy.

There are different types of hysterectomy. The type of hysterectomy you have will depend on the reason and how much of your womb and reproductive system can be safely left in place.

Total hysterectomy

During a total hysterectomy, your womb and cervix (neck of the womb) is removed.
A total hysterectomy is usually the preferred option over a subtotal hysterectomy because removing the cervix means that there is no risk of you developing cervical cancer at a later date.

Subtotal hysterectomy

A subtotal hysterectomy involves removing the main body of the womb and leaving the cervix in place.
This procedure is not performed very often. If the cervix is left in place, there is still a risk of cervical cancer developing and regular cervical screening will still be required.

Total hysterectomy with bilateral salpingo-oophorectomy

A total hysterectomy with bilateral salpingo-oophorectomy is a hysterectomy that also involves removing the fallopian tubes (salpingectomy) and ovaries (oophorectomy).
The National Institute for Health and Clinical Excellence (NICE) recommends that the ovaries should only be removed if there is a significant risk of further problems. Your surgeon will be able to discuss the pros and cons of removing your ovaries with you.

Radical hysterectomy

A radical hysterectomy is usually carried out to remove and treat cancer when other treatments such as chemotherapy and radiotherapy aren’t suitable or haven’t worked.
During the procedure, the body of your womb and cervix will be removed, along with your fallopian tubes, part of your vagina, ovaries, lymph glands and fatty tissue.

20131016-201951.jpg

Advertisements
Leave a comment »

Pre-operative education session.

Pre-Hysterectomy Education Session.

To encourage enhanced recovery.

Today I attended a pre-hysterectomy education session which is designed to encourage an enhanced recovery meaning a shorter hospital stay and to help partners understand what were going through and how to help us and how to best support us. I was a little dubious about this at first not really knowing what I was walking in to. I entered the meeting room and there was 10 ladies having various forms of hysterectomy and about half had partners with them. I’d say they varied in age from one lady in about her 80’s to me, 26. My partner seemed to take a genuine interest in the session and my friend who also attended with us.
We started the meeting with a consultant describing the various forms of hysterectomy and various methods of how there performed. He then went on to the anaesthetic side of it and recovery. My main concern is pain relief he was talking paracetamol meanwhile I’m nearly keeling over thinking if I need morphine at home paracetamol sure ain’t gonna help after this, but I was quickly put at ease by the nurse who reassured me ill see the anethatist before surgery an he will give me further pain relief options. Breath a sigh of relief an now we moved on to physio.

A lovely physio came in and showed us pelvic floor exercises and muscle strengthening exercises to help prevent pro-lapse after surgery. I had a lovely chat with her in private discussing my weak pelvic muscles and bladder issues and she is arranging extra physio for me on the ward & a follow up.

Next was diet & nutrition. We’re gonna have some gorgeous nutritional drinks pre-op to help last the day without food & fluids! I’m so thrilled about these lemonade flavoured drinks that have undoubtably never seen a lemon in their life! I have to endure 6, 4 the day before & 2 on the day! Lovely.

Next up the actual pre-op. Mines in December an will be a chance to get personal opinions & options on pain relief and how my recovery is going to be. I doubt ill be hoping outta bed jumping in the bath the next day as they seem to think is possible. But I hope it’s not gonna be to hard.

I’m extra nervous about this, but as my partner said today “why you nervous about something you’ve chosen to do!” Stupid init? But not having this I haven’t got a life so this isn’t really a choice deep down.

I found the session very informative over all they taught me a lot of do’s an don’ts an gave me lots of reassurance knowing I was nervous. So feel alot better.

20131016-200856.jpg

2 Comments »

Life with endometriosis.

Life with endometriosis….

Sorry it’s been a while, it’s been kinda crazy! In September I had an appointment with a surgeon & my new gynaecologist. Surgeon sent me for a flexi sigmoidoscopy.

Now the flexi, well that was a barrel of laughs. Bowel prep drinks. Most of us endo sisters have had an experience with bowel prep. This was the infamous orange flavoured stuff that was evidently made by someone without taste buds! Vile would be an understatement. I drank them and spent the most part of 6 hours screaming in pain wanting it to just stop. I then left my house at 5am to make the hour long journey to the hospital. I gets there an I was told I’d be sedated due to the fact they new it’d be an uncomfortable experience for me to say the least! Well the doctor had 2 rather sad attempts at putting a line in me an basically just gave up saying “we don’t normally sedate you for this anyway so just have it without!” I was less than impressed with his effort or attitude. Eventually I convinced them to give me entonox so i’d at least be unaware but I still felt the pain! He cleared my bowel said it’s in spasm an that’s incurable & discharged me. So I left that appointment distraught about the fact my bowel will always be a massive issue but the surgeon had warned me that’s what he expected would happen, he had an idea it was just a twisted spasming bowel. “Just” being the operative word. It’s not him living with the pain is it! It’s me with the constant spasms and twisting sensations & struggling to cope with the daily pain. As I’m writing this it’s 5am because I just can’t sleep with the pain.

Anyway back to gynaecologist I went, bowel is incurable now I need to get rid of these periods at least. Iv had 14 months of zoladex an I’m pretty fed up with the medical menopause now. So he agrees to a total hysterectomy leaving my ovaries behind. But he emphasises the fact this will not cure my pain. All it will do is permanently stop my periods with no need for hormone treatment. That’s fine pass me the consent forms I just want at least some relief, even if it’s not total relief. Now I can stop sticking my head in the fridge everytime I have a hot flush! An maybe my moods might be better I mean one minute I’m sitting having a nice chat with a cup of tea next minute the tissues are out an I’m howling and sobbing uncontrollably! Not fun. So consent forms are signed, bag is packed, now I’m just waiting for that precious letter telling me the date of my hysterectomy. Thanks for listening endo sisters.

Yellow hugs to you all.
XxXx

20131007-060853.jpg

Leave a comment »

Endometrial Inflammation.

Hi, it’s been a while. Iv been in and out of hospital recently it’s become quite distressing. Nobody could quite figure out what was wrong. Until now. Several weeks ago I was struggling to go the toilet and in severe pain. I noticed my ‘toilet habits’ were slightly different to usual. But I didn’t think to mention it. I’m quite a shy person really. On a recent visit to hospital because of the severe pain I did however mention it and after a blood test which showed up problems with my platelets it was discovered I had endometrial inflammation of the bowel and possible internal bleeding. So now I’m facing a possible bowel resection. If not then its a hysterectomy. I’m absolutely terrified to say the least. I guess this is just the start of another journey with this illness that I have to face. I feel quite alone with it all as well. Lets just hope they can fix it now.

1 Comment »

Endometriosis Awareness Month.

Endometriosis Awareness Month.

It’s march, so that means one thing. Get out your yellow its endometriosis awareness month! It’s so important that we raise awareness of this illness. So many women suffer, many of them unable to afford or get health care. Awareness is everything. We all need to support each other.

This illness can leave you feeling low, lonely, vulnerable and emotionally and physically drained. Support and knowing people understand can make the world of difference.

20130301-151447.jpg

Leave a comment »

Physiotherapy.

Swimming and Physiotherapy.

Iv found a new relaxing way of relieving pain and helping those sleepless nights. Swimming and saunas. (with a jacuzzi thrown in for fun!)

It’s so relaxing and so good for your body. It’s no cure but it’s certainly helped my cramps keeping active, well as active as I can get. Iv had to adopt my own technique to swim as one of my legs don’t work at all and the other only partly works. Iv learnt to front crawl (breast stroke) using my arms and half of my left leg.

The sauna and jacuzzi help to relax my tense muscles. I get a lot of tightness and tension because of my mobility problems and illnesses the spa really helps relax this. It’s also well known endometriosis can be triggered by stress. Relieving that stress can help relieve those cramps and pains.

I get awful pains due to adhesions in my bowel, these spasms and cramps I suffer can leave me bed bound. By lowering my stress and relaxing, these spasms and cramps ease off. I still stand by the fact this is not a cure, but it certainly helps.

20130228-195142.jpg

Leave a comment »

Endometriosis….

Endometriosis.

Endometriosis is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity. Endometriosis is typically seen during the reproductive years. There is no cure for endometriosis, but it can be treated in a variety of ways, through pain medication, hormone treatments, and laparoscopic surgery.

Symptoms include severe pelvic pain and stomach cramps, painful sex, urinary problems, bowel problems and in some cases infertility. You can also suffer depression and nausea. Symptoms vary for each woman.

Infertility; Many women with infertility may have endometriosis. I myself cannot have children of my own. I have suffered many losses and grieved for the children I never had. Endometriosis can lead to adhesions. It has been suggested that endometriosis lesions release factors which are detrimental to embryos or alternatively, endometriosis may develop in women who fail to conceive for other reasons. Infertility can be related to scar formation due to the endometriosis, however endometriosis may also interfere in more subtle ways like chemical agents may be released that interfere with reproduction.

Infertility is hard emotionally and physically. Infertility has been the most painful experience iv ever had. It’s so hard knowing the one thing ill always want is the one thing ill never have.

20130227-172458.jpg

Leave a comment »

Spa day.

Spa day, time to relax….

I decided to try some relaxation in the hope of pain relief. Also being unable to walk due to my accident has been getting me down so I was told swimming might help. I booked in for a few hours at a local health spa with swimming pool and today was the day….

I started with 30 mins in the heated swimming pool, and for the first time in months I stood on my own and took my first steps. It felt amazing. I felt so independent and free. Iv never felt so happy, I nearly cried. My partner who happens to be a training physio had me walking in water, standing on my own, swimming widths and floating. It felt so good. After 30 mins it was time to go to the spa.

I suffer with brittle bones so my partner recommended a sauna, “good for the bones” she said. I decided to start in the jacuzzi relieve some tension in my back and get the circulation in my legs going. Then it was time for the sauna. It felt so relaxing and the tension and pain just seemed to lift for the 20 min session. Then it was back to the jacuzzi. More relaxation and the circulation definitely got back to my feet. For the first time in months they weren’t cold, I could feel warmth!

I have to say if you are suffering with chronic pain, put the pills down for an hour and go to your local spa for a bit! It feels amazing to be pain free without the drowsiness and sickness from all the pills! It’s not a cure but it’s certainly a relief for a bit….

20130226-203226.jpg

Leave a comment »

The Elephant In The Room.

The Elephant In The Room….
Is it me?

For the last 4 months iv felt physically neglected by my other half. I’m starting to wonder if it’s me?

I went through a lot of treatments and counselling in order to be able to have a pain free physical relationship. As we all know endometriosis makes our private life very difficult. I now feel all that treatment is a waste.

Is she scared of hurting me, or does my condition just put her off. I really don’t know but I do know it feels like something is missing from our relationship and when ever the subject comes up, it’s like there’s an elephant in the room.
I often wonder if other women with this condition have this same problem….

20130225-113238.jpg

Leave a comment »

Happy Families.

Happy Families.

I have struggled for many years with my family. They know I’m sick yet can’t seem to help but neglect me and not support me. It hurts when I am in hospital and the patients around me have their mums visiting but I never do and if she does manage a visit its never a compassionate one.

I always wonder what it’s like to have a loving relationship with a mum. People always say “my best friend is my mum” and I wish I knew how that felt. My mum has always had the carry on with no sympathy attitude. Even when I was grieving after a miscarriage she said “just get over it and carry on” I found this very harsh.

I guess the final straw came when I was diagnosed with a life threatening auto-immune system disease. She promised at first to support me and help me but when it came to me needing some love she simply said “I could get hit by a bus tomorrow, but I don’t go on about it!” That was her idea of support I suppose. That moment broke my heart and made me realise she’ll never change.

I have accepted now my life hangs in the balance yet I’ll never get the support I need from my family. I guess it’s that old saying isn’t it “you can choose your friends, but you can’t choose your family.” I’ll carry on through life feeling lonely and scared while they carry on not accepting how ill I actually am and the fact they will loose me one day wether it’s emotionally or physically. Or both!

20130223-155953.jpg

Leave a comment »