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Hysterectomy Risks – what I didn’t know…

I cannot go around making decisions without considering all the ramifications.  I have to say that the lack of sufficient information from my surgeons has been shocking.  In 2008 I was in so much pain that I begged for a hysterectomy.  (It’s worth saying that you have to be seriously desperate if you beg for a hysterectomy!)  Even then, I didn’t know all about the side effects – or else I may have begged for something else.  It’s impossible to say what else I would have begged for but I’d like to think I would have asked for something else!

image photo : Water drop Ovaries

What I really wanted in order to help me with my decisions was this list from the HERS Foundation.  What I got was a 20 minute examination and chat about what my options were.  Bearing in mind the examination involved my disrobing and having a trans-vaginal scan, that really didn’t leave enough time for the chat.

She didn’t give me any recommendations but tried to get me to try the Mirena coil again which I strenuously refused after the side effects I experienced when I tried it in 2006.

Once again I find myself angry with doctors!  Not only did they take over 20 years to diagnose me but they never seem to give me enough information.  Oh sure they answer my questions but they don’t offer any further relevant information.  I don’t even know what grade of Endo I have!  It’s at times like these that I’m grateful for the internet: without it I wouldn’t know what questions to ask in the first place.

Foxy – 5th November 2011

Choices, choices

I’m going to take the time to thrash out what I feel are the pros and cons of the treatments I’ve been offered by the consultant I saw on Tuesday.  As I find thinking on the page just as helpful as talking to Helios and my mom, I hope you don’t mind my “thinking out loud”.

  1. Drug Treatment (Lupron)

Pros

  • Temporary effect
  • Won’t have a period at all while on it

Cons

  • Will take time to take effect (which is a bad thing if I am trying to cope at a full-time job)
  • May not work
  • May not have the same effect as a surgical hysterectomy
  • Would need to take HRT (progesterone) which has been known to make me crazy.
  1. Laparoscopy to treat endo

Pros

  • I’ve had this before so know what to expect
  • If done well, can significantly reduce pain for a period of 2-3 years for me (but not guaranteed!)

Cons

  • It’s still surgery and has risks
  • Will still need to take birth control tablets
  • Will still get periods
  • I know for certain that pain will return in due course
  1. Hysterectomy (but retaining ovaries)

Pros

  • Never have a period again!!!!
  • No need for birth control

Cons

  • Endo will certainly return and I will need to ascertain what new symptoms to anticipate
  • Need to find out if I will need hormone treatment for endo and/or PCOS post surgery
  • Irreversible
  • Need to find out how to ascertain when endo has spread enough that I need to see a doctor again
  • Will my hormone levels still rise and fall every month?
  • Will it affect my physical relationship with my husband?
  • Not sure if it will positively affect my pain levels
  • Don’t forget all surgery has risks
  1. Hysterectomy (with ovary removal

Pros

  • Never have a period again!!!!!
  • No need for birth control

Cons

  • With the added element of ovary removal – hormone levels will be a complete unknown and therefore impossible to anticipate.
  • Will need to take HRT post-surgery
  • I will still have endometriosis – so need to ascertain what new symptoms to anticipate
  • Irreversible
  • Will it affect my physical relationship with my husband?
  • Unsure if it will positively affect my pain levels
  • Osteoporosis runs in my family so, at the very least, I would want a strategy to combat this.

My current thinking is to reject the chemically induced hysterectomy – but not outright.  If I have surgery and then try the lupron, I may find that an appealing option because, if the lupron is difficult for me, I would know that my pain would not be as bad when I came off it.  I don’t know if they’ll let me try it in that order but that’s what I’d like to do.

As appealing as the lap is, I am concerned that my doctor may be right in her thought (I won’t have a diagnosis until the womb is taken!) that I may have adenomyosis.  The symptom that tipped her off was post-intercourse back pain.  She examined me with a trans-vaginal ultrasound (or I call it sonogram on a stick!) and found that my uterus seemed “painful”, that she expected it to be pliable but it seemed very solid and had no movement.  She asked if I had a history of fibroids and I had the rare opportunity to say “no, not that one doc!”  If she’s right then the lap won’t go far enough in removing my pain-giving beasties…

Since my examination, when Helios and I were intimate, I experienced discomfort on climax.  It wasn’t horrible and, because I was enjoying myself, I called it “odd” at the time because I didn’t want Helios to stop.  I am so grateful that Helios hates me in pain.  Pain is not sexy.  However, the incident served to cement the thought in my mind that if I don’t do something to get my uterus out, that I may be having more discomfort during intimacy.   This could lead to less frequent intimacy which, over a significant time period, may lead to a change in our relationship.  I think I’ve said it before but it bears repeating – now that I’m in a healthy and happy relationship, I want to do everything in my power to ensure that it remains so.

My next choice therefore is the hysterectomy but retaining my ovaries.  The significant plusses to this are 1) I will never have a period again, 2) with ovary retention I can ask to try the chemically-induced hysterectomy post-surgery in order to suppress the return of my endometriosis and 3) if I do have adenomyosis, the discomfort I experience on intimacy will completely disappear.  However, if it’s not adenomyosis, then I may have another new pain-giving beastie and I’ll be a medical miracle worthy of study!!

As with all my choices, I assume I will need further surgery for endometriosis in due course – while that will be the case for all my choices, I am slightly in the dark as to what form of pain I will encounter next if I have my womb removed.  Will it be worse?  Will endometriosis spread throughout my pelvis?  Perhaps it will want to travel further afield, get a train ticket and go around the UK?

At the moment I’m completely discounting a full hysterectomy with ovary removal.  I feel this option is simply a bridge too far.  I feel that I need to retain my ovaries (as PCOS-ridden as they are) in order for me to feel a bit more womanly.

With all the usual frustration of my conditions, why oh why can’t I just have an easy choice?  Just for once wouldn’t it be nice to be given a tablet and told “You’re cured!  Now off you go, I have sick people to attend to!”  Nope.  We’re stuck in the queue of sick people, tapping our fingers against our new list of ever-growing symptoms.  I wish I had a crystal ball to see the different ramifications of each option so I could choose the option I can live with.

Isn’t it ridiculous!  I’m sitting here crying because my options are so crap that I have to choose one that is the least worst!  When else does anyone do this??  Oh yeah.  When we choose our politicians!  That’s the only time when healthy people can begin to contemplate how CRAP my life has become thanks to endometriosis!

Wishing you a brighter future

Foxy

Supercalafragilisticendometriosis

Monday morning I got up at the usual time and went to London where I met my friend at Waterloo and then we walked to The Hilton at Park Lane for our spa treatments.  This is the friend who has a hard time saying endometriosis and instead turns it into a word that Mary Poppins would be proud of!

On the one hand it was a great spa experience because it was relaxing and the masseuse got rid of the knots in my shoulder; on the other hand it wasn’t nearly as good as I’d hoped – we were in the basement, there was only one toilet for the four gals who were doing the treatments so we had to take turns, and there was a bit of building work going on outside so it was a little difficult to relax with all the THUMP, THUMP, THUMP, THUMP, THUMPING.  Also, I was expecting us each to have our own treatment rooms but my friend and I shared a room and we had a therapist each.  The room itself was a bit hot and very cramped.  I didn’t like it not because I find it uncomfortable being naked in front of a woman (I used to attend a gym.) but because one of the therapists would talk and one of us would answer.  It just wasn’t right because I didn’t feel comfortable saying this or that for fear of interrupting a good experience for my friend.  As frustrating as it was, I did enjoy it.

We spent the rest of the day walking through London – we went to Piccadilly to do a spot of Christmas shopping at Fortnum & Mason only for me to discover that the prices for everything there was really too far out of my reach.  I got Helios a jar of marmalade, vowed never to spend £5 for a single bar of chocolate and we continued our adventure.

We made it to Covent Garden and had a very nice lunch with some wine.  While I was there I discovered a tea shop and, I’m proud to say, I got some delicious jasmine tea!

After that we walked back toWaterloo, said our goodbyes and went home.  What a lovely day!  We walked about 5 miles and I’ve got very small blisters on my baby toes but it was worth it!

This next bit contains explicit details about my doctor’s appointment.  Don’t say I didn’t warn you!  This morning I got up again at the usual time and drove to the local hospital for my appointment with the specialist.  I got a minion for the appointment but was very pleased with how thorough she was in examining me.  Firstly we talked about how my pain had been increasing over the past cycles.  She was surprised when I told her how my flow had been incredibly hard at certain times of my cycle – my birth control should eliminate heavy periods.  She’s given me some tablets to try to minimise the flooding.  I told her that sex itself wasn’t painful but that I got a backache afterwards.  She mentioned that she was a little concerned that I appear to have a history of smear tests that are less than perfect and, noting that I was exposed to DES, she wants to test me for scary viruses on my cervix.  Should anything be found, a small portion would be burned off or removed.  I’m good with that.  I cannot imagine long-term side effects from it and I’d probably benefit from the lack of worry after every smear…

She then decided that she wanted to see my internals so I hopped up on one of those tables and I notched up another doctor being in there.  I did tell them that I’d had more doctors in there than I’d had boyfriends.  The nurse chuckled as the doctor poked and prodded me.  I find the sonogram on a stick a bit uncomfortable but not agonising.  It’s easy to tolerate if you relax, lay back and think of England.  (!)

I was delighted by how she searched for things because she talked throughout the test.  I was told that my womb is leaning towards my bladder – something I never knew.  She was unable to find my right ovary – but said that at this point in my cycle it would be difficult to find.  So I said that she wouldn’t find my left one – I’d hidden it in my left shoe.  So when she found my left ovary I said that I’d have to try harder next time!  As she examined me, she told me what she was finding and why that’s abnormal.  In particular, my womb is very solid and didn’t move very well when pushed.  My left ovary was also solid and without movement when pushed so she presumed that the right one would have the same problem.  I can only surmise that my endometriosis is covering certain areas and leaving them sticky again.

So, as always, I have three options: 1) pain management with drugs.  She would like to put me on the mirena coil and I flatly refused.  She suggested the drug-version of a hysterectomy.  I’m curious but want to be sure that I won’t fall pregnant with it.  2) laparoscopic surgery to clear away any endometriosis found and 3) hysterectomy, including the removal of ovaries.  I have a follow-up appointment on 8th November where I can discuss my options and schedule a surgery if required.

For once, I’m reluctant to consider the hysterectomy option – not because I want children but because I like myself at the moment and don’t want to consider the personality changes that a hysterectomy may cause.  If I may be blunt, I don’t want to lose my sex-drive now that I’m finally in a happy and healthy relationship.  Oh sure, I’ll be given HRT and it will be mostly progesterone so my endometriosis won’t grow back but I don’t always do well on progesterone birth control pills so there’s no telling what havoc I could cause if I don’t have my ovaries.

The drug option would be good if I weren’t already content with my personality at the moment.  So it looks as though I’ll be requesting another laparoscopy.  I have plenty of time to think about it…

I did feel a little sore after my appointment but that’s passed now.  I’m off to bed soon.  Good night everyone.

Foxy

Five things Friday

  1. I cannot stand Cricket.  I find it painfully boring.
  2. My mom will be sad to read that I’m still having problems with my feet.  The tendons on the soles of my feet – particularly the one linking my big toes and my heels – occasionally experience a momentary white hot pain that makes me immediately stop walking.  It’s not a daily problem but it’s more and more regular – especially if I walk a lot.  I have a new appreciation for my feet.  If I have the same foot problem that Mom does it’s another chronic condition called plantar fasciitis and is characterised by inflammation of the feet.  OUCH!  At the moment I treat my feet by doing a lot of stretching, and massage with calendula oil.  It helps but doesn’t prevent more pain.
  3. I was delighted that my sister sent me a link to inspire my blog-writing.  More details of that in the days to come…
  4. I love cooking and not just cookies.  I make a great risotto, baked salmon, chilli con carne, chicken stroganoff, curry, etc.  It’s another way to be creative.  I also use cooking to express my love for someone.
  5. I’ve temporarily given up on the Endometriosis Tea.  While I find it terribly tasty, I also find myself wondering if it will counter-indicate with my birth control pills.  Does anyone want my leftover ingredients to give it a go?

Five things Friday

1. Helios and I watch a lot of science fiction. Currently it’s all the Star Treks starting with Enterprise.

2. In my 20s (when my birth control so effectively managed my endometriosis symptoms that I considered myself normal) I managed to get a degree in European History and French. I still love history and regularly watch documentaries on the Yesterday channel.

3. I like rain. I’ve always liked it. My favourite memory of the rain was when I was walking in the middle of my old university campus. It was summertime and the weather, as always in the Midwest US was painfully hot. The rain was a cool respite – a gift from the heavens.

4. I nearly fell over when I read that Marilyn Monroe had endometriosis. The fact has made me look at her in a completely different light. The success, drugs, marriages, lack of children… In the middle of all that was pain. My pain. She and I have something in common. After I got over the shock I couldn’t help but think: “Who else has endometriosis who can help bring light to the illness”??

5. Despite only spending two days at work, I’m still pretty tired. I think I overdid it by running files up and down the stairs again. My feet are just killing me!

Learning your limitations

Endometriosis came into my life at a very early age.  I was 12 when I experienced my first symptoms.  Despite this, I had plenty of dreams when I was young: I wanted to become a teacher.  I wanted to write stories in the summers and become a famous novelist.  I thought I’d move to a French-speaking country and teach English as a second language.  I wanted a nice husband and 2 children.  They weren’t extravagant dreams – I’d have thought they were perfectly achievable!

To a certain extent I came close to achieving my goals.  While birth control effectively masked my symptoms in my 20s, I got a degree in European History and French but still needed by teaching qualification.  Then, as with many of us, life happened to me.  I met my first husband and moved to England.  By the time I was legally able to work in England, we really needed money so I took a job as a secretary.  Before I knew it, many years had passed, I hadn’t got my teaching qualification but I was a very good secretary.

My life wasn’t shaping up as I’d planned but at least I thought I’d be able to have a couple of children with my first husband.  I was taking birth control until the point when he decided that we ought to try for children.  When the birth control left my system, my familiar period pain returned in abundance.  It took another couple of years before I was diagnosed with endometriosis, PCOS and insulin resistance.

Like Peter Waite on “Letting Go of the life we have Planned”, it took me a number of years to accept life in my body.  Oh sure, I’d had endometriosis all along, but having strange symptoms and learning to accept your diagnosis and the limitations that a chronic illness places on you are two different things.

Learning to accept yourself – including any malady you have – takes time.  Lots of time.  In the process you may need to re-evaluate your long-term goals.  You may need to ensure that you don’t feel guilty for letting go your old life-plan.  You may need to learn how to manage your physical symptoms.  You may need to make changes to your lifestyle.  You may even need to ask for help from friends and/or a partner.

All these considerations take time and effort.  Don’t be too hard on yourself.  Don’t feel guilty when you can’t do what you wish you could.  Don’t worry when life-plans need to change.  As with the rest of your life, the journey has yet to be completed.

Foxy

Honesty

Thanks to Jo Gifford at The Dexterous Diva for her inspirational post: Honesty.

As Jo says, being honest isn’t easy, is it?  Being in pain for so long without a diagnosis can mean that although you may know something isn’t right, you are working under the false premise that everything is normal with your body.  You could say I went through a grieving process after my diagnosis.

The seven stages of grief are:

  1. Shock and denial
  2. Pain and guilt
  3. anger and bargaining
  4. Depression, reflection, loneliness
  5. The upward turn
  6. Reconstruction and working through
  7. Acceptance and Hope

For me, I think I experienced the first three stages at once – going backwards and forwards through these stages like a remote control car that bounces across the room and into walls before being turned around.  I was suddenly 17 again and full of feelings I could not control.  I tried to carry on my normal life without any help – partially because I was trying to get pregnant at the time so couldn’t take any medication.  Also partially because I was too proud to admit that I actually had a problem…

Although I told people at work what the condition was, I tried to get along at work with no help.  This resulted in me not coping with anything well.  Despite the fact that the first surgeon lasered off my endometriosis legions, I needed time off work periodically simply to cope with my pain.  I know I should have discussed it with my HR people in detail but, at the time, I didn’t.  I felt weak enough as it was, I didn’t want to feel as though people had to make allowances for me.

Because my first husband would not discuss my illnesses with me made me feel lonely and less of a woman.  I would say that the long hours he spent at work was a real problem but after my surgery he simply went back to being himself.  He never realised that I might need more support and I was too much in denial to admit that I needed his help.  I was angry at my body that I could not fall pregnant.

I was in a downward mental spiral: I had a diagnosis but wouldn’t discuss managing my symptoms; I felt guilty when I was in pain which was made worse when my first husband would make snide remarks implying that I was lazy when I was in pain; I was angry that I should have to endure this pain that no-one else seemed to understand.  Of course it didn’t occur to me to help people understand my pain: I preferred to endure it all in silence – which made my depression and loneliness worse.

I didn’t actually achieve honesty until I got to stage 6.  I officially gave up trying to fall pregnant.  I started taking lots of medication in an effort to get on top of my symptoms.  I took a neural inhibitor, painkillers, HRT patches for my PCOS symptoms (which provoked my endometriosis symptoms), and ultimately I gave in and started taking anti-depressants.

At the same time I separated from my husband and became close friends with Helios.  Where my first husband didn’t understand, Helios did.  Where I felt lonely and depressed, I started to hope again.

That was years ago.  Now I have a pain management system that works reasonably well for me.  I wouldn’t say I’m delighted – only a cure would make me completely satisfied – but I manage with the cards I’ve been given in life.  Although I am not in a position at work where I can work from home, I am honest with my work colleagues and, on the days when I am in pain, I am given tasks that I can cope with.  At home I have my wonderful wonderful husband who never makes me feel guilty or lazy.  When I am in pain, he asks if he can get me anything and then sends me to bed.  I know I’m bound for bed when I don’t have the energy to argue – so I head for bed.

Foxy

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