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.

2. 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

3. 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

4. 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

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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Embarrassing Bodies – Polycystic Ovary Syndrome (PCOS)

Recently PCOS has featured a couple of times on the TV show: “Embarrassing Bodies” here in the UK.  As if having Endometriosis wasn’t bad enough, I’ve got PCOS as well.  I therefore had no problem identifying the PCOS sufferers on the programme.

As with endometriosis, PCOS can take a few years to diagnose.  In my case, I can almost understand the confusion when diagnosing: I don’t have the principal symptom of menstrual disturbance because I’ve been taking the birth control pill for so many years.  However, when I was a young teen, my symptoms included: acne (At one point I was on a course of tetracycline for my acne), a slight excess of hair growth (Hey Mom!  Remember how sensitive I was about developing a moustache when I was still in high school?!), skin tags and dandruff.  As far as I was concerned, my skin and hair couldn’t possibly be related to my ovaries!

Infertility is also a symptom and I was found to have the characteristic multiple small cysts in the ovaries during an ultrasound scan.  The three symptoms that define PCOS are: polycystic ovaries, raised male hormone levels and reduced ovulation.

Other symptoms for less lucky women include more severe male patterned hair growth and male patterned baldness.  For me, the excess dark facial hair and dark back hair were the obvious symptoms that identified the patients on Embarrassing Bodies.  I felt sorry for them and I feel I have to ask: how desperate must you be to go on national television in order to get treatment?  I don’t know why these people cannot seem to get treatment they need from their own doctors but I find it scandalous that someone would feel the need to parade themselves on national TV.  Could it be that people want to raise awareness for their maladies?  Or are they irretrievably stupid?

As with endometriosis, women with PCOS have a higher risk for other illnesses.  For PCOS these include high blood pressure, diabetes, heart disease, depression, cancer of the endometrium (uterine lining) and endometrial cancer (uterus).

While I’m not overweight, obesity is associated with PCOS.  I also have insulin resistance (which I regularly call prediabetes for ease of understanding).  Women with PCOS are at risk of developing type 2 diabetes – particularly if we have a family history of diabetes.

Like endometriosis, there is no cure for PCOS and treatment is normally directed to manifestations of PCOS: I am on a PCOS diet and may be prescribed with Metformin (Glucophage) should my insulin resistance symptoms worsen.  For women with particularly low oestrogen levels, they are given HRT patches.  Unfortunately for me, it was the HRT patches that worsened my endometriosis symptoms and ultimately made me beg for my third laparoscopy to clear the growing endo.  Balance of hormones is, for me, the trick that I’ve had to work to achieve.

Finally, like Endo, PCOS is frightfully common.  Research studies of women who had an ultrasound scan of their ovaries found that up to 1 in 4 women have polycystic ovaries.  Many of these women were otherwise healthy, ovulated normally and did not have high levels of mal hormones.  It is thought that up to 1 in 10 women have polycystic ovary syndrome (i.e. at least two of polycystic ovaries, raised male hormone levels and reduced ovulation) but it is thought that these figures may be higher.

Wishing us all a healthier tomorrow!

Foxy

Metaphors and a Health Update

Dreams help us make sense of the waking world around us.  Some people believe that dreams are the windows onto other dimensions, but I’ve got a much more down-to-earth view of them.  I think that dreams are metaphors of your waking life.  

For instance, I woke up this morning in a bit of a terror.  I had been dreaming that I was in an office building with three floors.  There were windows across from the open elevator.  Now, when I say the elevator was open, I mean that there were only thin bars around the standing area and the buttons for the floors were on one of these bars.  There was no protective glass to contain the people.  I was standing to the right side and slightly away from the buttons, holding the bar with my right hand.  I could see my reflection in the slightly bronzed mirror.  I think I may have been preparing for an interview?  I must have pushed the wrong button because I went straight to the top. 

The problem grew as the floors passed.  There were only floors at ground and first floor level.  I wound up suspended in the air not quite near enough to the buttons to get me to a safe level and I found myself gazing in the mirrors.  I was terrified that I wouldn’t be able to get back down.  I clutched the right hand bar and tried not to look down…  I was shaking when I woke up.

Objectively, I know what this is about.  I am still terrified, even though I don’t let myself feel it during my waking hours, that I will find a job and I will be able to make ends meet.  I know for the moment my savings is keeping me afloat but I’d obviously be happier stopping off at the right floor of that office building and starting work rather than be left hanging!

I was wondering if I should take the opportunity to re-train as something else.  Trouble is that I would need to know what direction to go in, and above a certain amount of money in order to keep the roof over my head.  I’ve thought about teaching, palm reading, gardening, wedding planning and at one point I was considering creative writing for a living – or at least adding to my pocket while I’m looking for a full-time job.  I know it’s a strange mixture of professions (if you can call palm reading a profession!) but I thought I may as well consider everything – no matter how odd! 

(As an aside, and because I know my mother worries, Helios does contribute to the household.  I don’t want any of you thinking that he’s taking advantage of me!  He’s always contributed to the household and I’m only worried about the rest of the household bills.  I won’t go bankrupt anytime soon because I still have money in my savings account, but I’d obviously feel more comfortable with a job!)

 So, I’m back to looking for an office job.  The good news is that the Summer Holiday season is nearly upon us and I expect I’ll at least get temp work over the summer holidays.  The agency I visited yesterday said that they should be able to find me some work – even if it’s not permanent – because the market seems to be picking up again and temps are the first to feel the uptake in the market.  So, I’ve got everything crossed and I’m hoping I’m not left dangling in the air!

In other news, I have been busy staying out of trouble.  My energy levels are much more than they were.  I have been cooking and cleaning and washing the laundry and I’m happier about keeping positive.  Oh, this doesn’t mean I don’t have darker days.  But for the most part I’m feeling brighter.  I think I’ve always been a happy soul and it’s nice to feel like my old self again.

Now that I’m basically concentrating on treating my endometriosis symptoms, my PCOS symptoms have come back.  My endo treatment consists of running my birth control pill packs together and having fewer periods per year.  I’m still on my insulin resistant diet – lower carbs and higher veg and protein.  I am allowed a serving or two of fruit per day but by in large I need my vitamins from the veg.  (YES Mom, I am also taking a multi-vitamin every day with breakfast!)  More recently I started taking Prozac and another anti-depressant to help me get to sleep at night. The sleeplessness is a PCOS symptom.

 Normally the treatment for PCOS is HRT to add oestrogen to my body that’s lacking due to the cysts on my ovaries.  I tried HRT but it fed my endometriosis and I had to have another laparoscopy back in November.  So, now I’m trying to ignore my PCOS symptoms including the sleeplessness and dark hair in places a girl doesn’t want hair.  I’ve also got the beginnings of a decent bald patch at the back of my head – I’m totally covered at the moment but am much thinner than I was.  Finally, my vaginal burning hasn’t been too bad recently.  I think I get that when I stray from my strict diet.  I can’t tell you why there’s a link there, I’ve just found that when I take a little too much carbohydrate, I get the familiar pain… 

While I know that I will never feel as healthy as I did in my 20s, I’m managing my symptoms as best I can.  I think I need to be realistic about my body and be grateful that my good days are still outnumbering the bad!

Foxy

Follow-up Appointment after Laparoscopy

 

I saw my surgeon as a general follow up after my laparoscopy.

 

I couldn’t believe how nervous I was seeing him again.  I was a little afraid about what he’d say when I told him that I’ve started taking anti-depressants.  I can’t help but feel slightly terrified when I mention this to people for fear that I’ll be judged badly…

 

The appointment itself went well.  I took a list and told him that I’d been feeling down since the surgery, I’ve been prescribed the happy pills and I’m still in pain in my lower right abdomen since the surgery.  He did say that my hormones would be down a bit after the surgery – particularly after all the drilling he did on my right ovary to remove a deep endometrium (which explains the lower-right abdominal pain!). 

 

I saw photos of my inner workings and I was surprised at what endometriosis looks like.  After all that pain I half expected a large hedgehog or porcupine-type beasty with lots of sharp scary teeth but I thought it looked like inner pimples.  The one on my ovary did look scarier to me but I was assured that it only looked scary but is now removed. 

 

He told me that I need to stop taking all my HRT, Metformin and IBS medication.  He told me that my HRT is feeding my endometriosis and the Birth Control Pill I’m on has enough oestrogen to keep my PCOS at bay entirely.  Indeed, he said that I shouldn’t ever have PCOS symptoms if I’m on the Pill.  He claims that PCOS doesn’t exist if I’m not ovulating.  Well, I know that’s not true because even now I’ve got lots of extra oestrogen coming into my system and I’m still growing hair in places a lady doesn’t want dark, manly hair.  YUK!  Taking this into consideration I’m considering totally disregarding part of his advice. 

 

However, with regard to diminishing the IBS medication, he thinks that the endometriosis has been irritating my bowels all this time.  Once I settle down I can take less and less of this.  I started taking the IBS medication when my bowel had become twisted in two places and I’ve not stopped taking it since.  I’ve found it so hard to tell what has been the cause of the pain that I’ve been taking the medication without thinking why or even if it all works.

 

The only thing that I can take more of is my Birth Control Pill.  The doc said that I can have a period only once every nine weeks rather than once a month.  It certainly sounds better than struggling once a month!  The only issue with this was how I broke the news to Helios that he was going to have a week off only once every nine weeks instead of once a month.  Well, I mentioned this to him last night and he didn’t seem that unhappy…  Lucky me!

 

Foxy

Laparoscopy

I finally had my surgery yesterday.  I’ve had a laparoscopy before – that’s where they go into your stomach via the belly button, fill you with gas so they can see what they’re doing, and then they poke a further two holes in you a little further South.  The rest is all about what they find and what they do about it.  I must admit that I was rather hoping that they would have found something that would have made them say “Foxy, let’s give you a hysterectomy!” but that’s not happened.  Unfortunately, I expect the surgeon would have said that if he thought that I should have it by now. 

 

In the meantime I feel like someone has kicked me in the stomach and I’m walking around the flat like an 80 year old.  Again, I mention Helios who took a number of days off work as holiday to take me to hospital look after me.  I haven’t had to lift a finger!  The food and drinks arrive regularly along with my tablets.  I get led and steadied everywhere I go and when I need to get up in the night, he’s patient and helps me to the toilet.  Ladies, if you ever get one who’s this good – keep hold of him with both hands!

 

I didn’t like the hospital.  Oh, don’t get me wrong, I’m delighted that the procedure is done but when I get to the place and I have to explain – more than once – what Insulin Resistance is and why I need protein at breakfast rather than just tea and cakes – it just doesn’t instil confidence, does it?  Honestly, everything on the breakfast menu was carbohydrate!  Cakes, toast, fruit and yoghurt – there was nothing there with an ounce of protein.  I put my request in and got some rolling eyes and more questions about Insulin Resistance.  Despite this, I tried to remain cheerful.  Later when I was on the table ready for surgery, I sung “Goodnight Sweetheart it’s time to go” as my anaesthetist gave me something to help me sleep… 

 

The endometriosis was widespread – located mostly on my womb, ovaries and bladder.  There was some on my bowel as well and it’s now been vaporised.  My surgeon said that I shouldn’t have HRT because HRT feeds endometriosis.  Isn’t that great.  Someone else hasn’t quite grasped the fact that I’m in a Catch 22 – if I’m taking things to help me cope with my polycystic ovaries it feeds my endometriosis, and if I am taking things to help me cope with my endometriosis my PCOS symptoms get far far worse.  It’s little wonder I want a hysterectomy – but I digress. 

 

The pain from the surgery hasn’t been unmanageable but there is some pain – I cannot stand up straight just yet.  I have to sleep on my back.  And where the evil nurse gave me an injection in my arm for my nausea – that still hurts.  Sneezing is scary and I’m trying hard not to get anything irritable up my nose.  Laughing isn’t an option either.

 

I have been told that pain in the shoulders is one of the side-effects of a laparoscopy – something to do with the gas that blows you up.  I’ve never had this problem but I expect this is because I’m a bit of a wriggler and movement is the best thing for any pain in the shoulders in this instance.

 

So surgery isn’t as scary as you may think.  It’s actually great if it helps and, these days, a laparoscopy is quite routine and far better than being cut from stem to stern to find endometriosis!

 

Foxy

Hormones and Moods

I’m shaking.  I’m not very good at dealing with crowds sometimes and when my fuse is short I wind up wanting to shout at the doddering old dears who block the aisles and back into me and bump me with their trolleys.  When my fuse is short I have to keep reminding myself that it’s just my hormones.  However, suffering the irretrievably stupid is difficult sometimes!

 

Mind you, I suspected that I shouldn’t go to the shops today because I was shaking even before I left the flat.  Normally the best thing for me when I’m in this kind of state of mind is just sitting down in front of the TV and not doing anything – not even the dishes – because as soon as I do Helios starts to get underfoot (which is unfair on him as the flat is entirely miniscule and at least he’s drying the dishes which is a great help) and I just want to slap him. 

 

So instead of another Star Trek disc, I’ve decided to bore you with tales of my utter frustration.  Although my upcoming surgery doesn’t have anything to do with my polycystic ovaries, I keep thinking that if I didn’t have ovaries that my hormones (or lack thereof) will be more evenly distributed throughout the month.  However, being on an even keel isn’t so good if the even keel means that I’m still coping with extremely low oestrogen levels.  So which is worse, no ovaries and HRT for as long as I can beg it from my doctors or continuing on as I am and taking The Pill to ensure no unwanted pregnancies together with extremely low oestrogen levels because my ovaries are so crap they may as well be thrown in the bin?  It’s not as though I’m not on HRT and suffering menopausal symptoms already!  I can’t help but think that I would be happier if it was all taken out so that I can start to heal.

 

My largest issue with a full hysterectomy is sex.  This is the subject that leaves me in a terrible quandary.  I’m finally in a relationship where I’m not just emotionally but also physically happy and now I’m contemplating changing my body in a way that may effect my desire and the way that I enjoy sex.  Wouldn’t it be nice not to have to take The Pill anymore?  Won’t it be nice not to get frustrated and short fused for no apparent reason?  But will it effect how I enjoy being physical?  There are no answers.  Oddly, I would be happy to suffer a lot of these symptoms if it means that I still am comfortable in the bedroom.  Being physical means that much to me.

 

Just to be clear, my upcoming surgery isn’t a hysterectomy – I’m actually having a laparoscopy for my endometriosis.  I can’t help but think about a hysterectomy, my frustration with my symptoms has brought me to the subject on my own without help from the doctors.  It’s not as though the doctors (who to be fair have been trying to help) have been terribly successful in treating all my symptoms.  My desperation has led me to the subject and the doctors are now trying to tell me that it’s a drastic solution and, of course, irreversible.  It’s not as though I want children!  I’m so fed up with the symptoms of both PCOS and endometriosis that I would like to scoop it all out.  I’ve had symptoms since I was 12 – that’s 25 years!  Is anyone surprised that I’m nearly at wit’s end?  Luckily, I have had a promise from one of my gynaecologists that she would give me a hysterectomy if this laparoscopy doesn’t help. 

 

But why am I so shaky today?  Is it because I’m worried about the surgery?  No.  I’ve had laparoscopic surgeries before.  I’ve had my pre-assessment at the hospital and I’m relaxed about what I can expect.  I am concerned about what they’ll find.  Or rather what they won’t find.  Sometimes it would be nice to find one problem and they can deal with it rather than finding a number of problems that will need a bit of tinkering to achieve a balance.  For example, I keep wondering if my IBS symptoms are interfering with how I feel about my gynaecological symptoms.  Or perhaps the endometriosis is affecting my bowels and leaving me with IBS symptoms?

 

I’m also frustrated that my vaginal burning is so bad today.  You know, I thought that it would get a little better when I showered this morning but no.  I’ve put my usual cream on but it only helped for about an hour.  Now I feel like I’ve got a red-hot poker there.  I can’t sit or stand or move comfortably.  Why is it that everything is taking so long to sort out?  All these symptoms!  I’m not convinced that the surgery will take care of all my issues. 

 

I’m not normally so downtrodden.  I promise to write something more positive next time.

 

Foxy