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Endometriosis Treatment: Birth Control Pill

I don’t think any treatment for endometriosis is worth its weight in gold but this one works for me.  I take several pill packs back to back.  My last cycle was nearly 12 weeks between periods.  The theory is that the fewer periods I have, the less pain I am in.

Plusses

The theory is fairly accurate.  I have a fantastic time when I feel normal.  I don’t live in the constant dread of pain.  I have it on good authority that I can leave it as long as 6 months between periods.  On the same theory, the fewer periods I have the better love life I have.  Because I have so many weeks between periods, my hormone levels are regular and I don’t have too many weeks where I need to take Milk Thistle.

Because I take birth control, I can plan when I have a period and ensure that my periods occur at the most convenient time for me: I can organise my periods around my life instead of my life around my period.

Minuses

My body periodically demands a period – meaning I have PMT and then spotting for a week or so before I go back to feeling more human.  Also the bloating is hard to hide.  I do spend a lot of time feeling a bit like a beached whale.  The longer I take the birth control, the more days I need to take Milk Thistle for PMT.  I also experience bloating and a right ovary that burns regularly.

It’s not ideal by any stretch of the imagination.  Ideal would be take a tablet and all the pain goes away totally.  However, I would tolerate another surgery if it meant that all the endometriosis would be completely eradicated.

Endometriosis is a nuisance because different treatments work for different women so just because something works for me (or rather I can tolerate this treatment plan) doesn’t mean that this will be good for you.  However, you have to know about all the options before you can try things that work for you.

Have a pain-free tomorrow!

Foxy

Pain

Not in a life-threatening way but the sort of pain that you can’t ignore.  I felt it creeping up on me earlier today.  My back tightened.  I kept walking oddly in an effort to stretch it out.  But it is endometriosis – no stretching will help.  I’ve been taking the painkillers for a couple of days to get it into my system before the worst of the pain takes hold.

It’s usually in my back – travelling down my legs – it’s making me incoherent.  My head rolls on my neck.  My eyes are blank.  I am easily annoyed.  It hurts to move.  It hurts to be still.  I’m unable to concentrate.  I have a hard time finishing sentences.  My womb is grumbling.  My ovaries are burning.  I’m tired but am having trouble sleeping.

Wave after wave of pain crashing over my back, oozing down my legs.  Having trouble breathing.  Catch breath – then deep breath again.  Don’t move.  Can’t keep my eyes open.  Can’t sleep.  Is there any way I can make this go faster?  Push.  Still pain.  Is there any way I can get through this?  Is it little wonder I dread my periods?!

Not feeling quite human.

Foxy

About last night

Mom, I know you like reading this blog so I’ll make sure to keep the gory details to a minimum!  If, despite my efforts, you’re still grossed out – you can’t say you’ve not been warned.

My wonderful Helios and I were fooling around last night.  It was fabulous as always.  After the proceedings, I felt odd and uncomfortable.  My womb wasn’t quite right.  I was spotting.  I wasn’t sure if I should take a paracetamol but dozed off safe in the knowledge that I could sleep through the night.

Unfortunately I woke up from pain at 12:30.  By this time the pain was shooting down my legs.  I was still spotting.  I decided to take a paracetamol/codeine and went back to bed.

I spent the next hour trying not to wake Helios.  I was tormented with thoughts of my endometriosis.  Should I go to work tomorrow?  I have to go to work tomorrow – no choice.  I’ve got plans.  But I won’t be able to function under this kind of pain.  Would I go to work but then come home if I can’t take it?  No.  I really needed the whole day.  Why do things always seem worse in the middle of the night?

I crawled over Helios again to go to the toilet at 1:30 a.m.and the pain was beginning to abate.  I was still unconvinced.  I just couldn’t decide if I should try to sleep on the couch.  I went back to bed and crawled over Helios.  It didn’t take long when I finally drifted off.

This morning I woke up, got out of bed and immediately had some breakfast and a mefanamic acid tablet.  I was still uncomfortable but was desperate to ensure I could work well.

It worked.  I managed to get to work and held off the pain well enough that no one at work could imagine what I’d been through the night before.  I’m still spotting.

The experience has convinced me that I need to make sure to have a period this weekend coming.  I had my last period in March.  I’ve managed to hold off pain for a number of months instead of weeks.  Since March I had a number of issues with bloating and PMT but, in an effort to control my pain, I really can’t complain.  However, I may feel differently this weekend!

Foxy

It’s a Monday

I know I shouldn’t complain.  I’ve got a lot of reasons to be grateful today but it’s Monday and I’m not feeling particularly grateful.  Downright grouchy is closer to the mark.  I’m tired and I want my right ovary to stop burning!

I hope I’m allowed the odd bad day?  I’m sure I’ll feel better tomorrow.

Foxy

Endometriosis Tea: Guinea Pig

I’ve recently been looking into alternative treatments for my endometriosis.  When I found a recipe for something called Endometriosis Tea, I was curious.  Here was a simple recipe for a tea that I could drink twice daily.  How hard could it be?

Here are the website and recipe:

http://www.endo-resolved.com/herbal.html

Endometriosis Tea 

1 teaspoon each vitex berries, echinacea root, wild yam rhizome and cramp bark

½ teaspoon each horsetail stalks, red raspberry and motherwort

1 quart water

Combine herbs and water in an uncovered pot and bring to a boil. Turn down the heat and let simmer gently for about 5 minutes. Remove from heat, cover and steep for 15 minutes. Strain out herbs. Drink at least 2 cups daily. This formula can also be taken as a tincture or in capsules. 

The endo-resolved website said that the tea will only begin to take effect after a few months.  As this is a long-term solution to a chronic problem, I’ll have to make the concoction a few times before deciding that it’s worth the candle.

The plusses so far are that the herbs are positively cheap in comparison to surgery.   Lucky for me there’s a place on the high street where I was able to find all the ingredients  so restocking will be a breeze.  Fingers crossed I see results!

In the meantime it’s been over 10 weeks since my last period.  I have had a number of  “periody” moments in the past couple of weeks but nothing so painful that I needed to be sent home from work.  It’s as if my body decides that I need to start and then, just as I’m beginning to notice feeling uncomfortable, it goes again.  I will be pressing on with the birth control pills through this week at work (my line manager is on holiday – leaving me to hold the reins) before contemplating giving myself a period.  If past experience is anything to go by, I could do with remaining sharp this week!

Foxy

Nine Weeks

During week seven I had some pain on the Wednesday: the usual period pain but not nearly so strong.  Unsurprisingly the next day I had a bit of spotting which left me in my usual panic – do I have a period or not.  I decided to wait for another week in the hopes that my spotting would stop.  My right ovary is very uncomfortable – it’s as if it’s stuck against something inside again.

Luckily the spotting and pain has stopped.  Both ovaries are uncomfortable.  It’s not all the time and not severe but when I feel it I can’t help but wonder.

Week eight has passed without incident.  My bloating has abated; my PMT has nearly disappeared.  I’m starting to wonder if those few days of discomfort during week seven was actually a “ghost period” and now I can get on with stretching my time between periods even longer.  Who knows?  I may stretch it to once every six months like the doctor at my colposcopy suggested!

Speaking of biopsies, I got my test results after the colposcopy.  The biopsy came back negative.  I have another follow up in September for another smear test.  I’ll mention the ovarian pain again and get any reassurance I need for just two periods per year.

I will admit to being very tired.  Last weekend and this weekend I’ve found myself needing a nap at least once or else fall asleep uncomfortably on the couch.  Of course if I find the fatigue too much, I’ll give myself a period and see how things go from there.

Today is another Bank Holiday in England so Helios and I are watching movies and relaxing.  Helios is ironing and I’m trying not to fall asleep on the couch again.  My right shoulder is still sore.  It’s been sore for a number of days – or even weeks.  While over the counter painkillers and Deep Heat help, it’s never long before the pain comes back.  Particularly beneath my shoulder blade has a number of painful knots.  I’m debating going to the doctor or just getting a proper back, shoulder and neck massage to see what helps.

Foxy

Betrayed by my body?

RT @PelvicHlthPsych: Mary Lou Ballweg – women with #endo feel betrayed by their bodies; others do not believe their suffering.

A rebuttal to the above retweet:

The thing I object to with the above quote is that “betrayal” is such a strong word.  I don’t mind my body.  It could be worse.  If I’d had the choice, I’d have chosen another body.  But betrayal?  No.  I’ve got an abnormal body but that doesn’t mean that I feel betrayed by it.  I’ve felt disappointed, distraught and unable to feel like a woman when I had my miscarriages.  I’ve been depressed thanks to the endometriosis.  Part of the reason my first marriage failed was due to endometriosis.

However, I am so much happier now that I consider all that went before to be a blessing in disguise.  The pain is something I continually endure.  Of course I’m not happy about it but I accept it as part of me as much as my fingers, toes and head.  My pain is something that helps me appreciate the good things in life – including my pain-free days, my fantastic Helios and supportive friends.  I would be a completely different person without my endometriosis pain and who knows if I would like that person?  I like myself the way I am now – and that includes the endometriosis pain.

Foxy

More Manchester Fun

A work colleague suggested that I take the afternoon off work and come toManchesteragain to see a testimonial game for Gary Neville’s retirement.  Before the days when a professional footballer earned more money than was really sensible, a testimonial game was given for retiring players and the proceeds went to the players.  These days the games are more symbolic and proceeds raised go to charities.  I couldn’t pass up the opportunity to go.  Helios unfortunately was unable to get the time off and I really missed him on the night.  I’ve only ever been to Manchester with Helios so in a strange way I felt as if he was with me even though he was still south of London.

However, in some ways it was nice that he had to miss it because my work colleague became a friend over the evening…  It takes just under 4 hours to get there and back from where we live so on the way to the event I heard her life story and on the way back I told her my life story.  Luckily she’s not the sort to judge and the time was spent simply reliving the old days.

At Old Trafford, Gary Neville started playing for the club in 1995 and many of his old team mates came to play for his retirement game.  Of note, David Beckham played and still has a bit of the old magic.  Wayne Rooney scored the only Man U goal but we lost the game: 1 – 2 Juventis.  As it was a friendly, the current big names were there but they didn’t play for long as the final game of the football season is soon…

It wasn’t quite 2:00 a.m.when I got home and I was still so excited about the day that I had a hard time getting to sleep.  I had a final visit to the bathroom at 2:45 a.m. so I know I got about 4 hours sleep last night.  Therefore tonight will be very swiftly to bed!  I’m making fish and chips with peas and will go to bed almost immediately afterwards.  No point in being a martyr and staying awake just to be grouchy with Helios, is there?

In other news I passed the eight week mark without incident.  I am not having any spotting and am not in pain.  I’m still suffering a bit of discomfort with my right ovary.  It’s not painful but I can feel a slight pulling on the inside every so often – if I’m stretching for example.  It feels as thought there’s a stitch in there that doesn’t give me any symptoms until I try and manoeuvre it free.  It reminds me slightly of when I’ve had a recent surgery and I’m trying not to move a certain way.

The other news is that my recent biopsy results came back completely clear.  I’m scheduled in for another smear test in September but I figure that’s only a good thing that they want to monitor me closely.  With any luck I’ve dodged The Big C totally!  Touch wood.

Foxy


 

Treatments for Endo: The Mirena Coil

The official line from my favourite informative website:  http://www.endo-resolved.com/treatment.html

“The Mirena Coil – The Mirena Coil is used by some doctors to treat the symptoms of Endometriosis by reducing the amount of blood flow in a woman’s periods.

The Mirena Coil is like many other types of Intrauterine Contraceptive Devices (IUD’s or coils) in that it is fitted by a doctor and remains in the womb for a fixed amount of time, after which it must be changed.

Most IUD’s make a woman’s periods heavier, but the Mirena actually makes periods lighter than usual. Because of this, it is frequently used as a treatment for heavy periods, and is now used as a treatment option for Endometriosis, for the same reason of reducing blood loss with the menstrual cycle.

It is made of a light, plastic, T-shaped frame with the stem of the ‘T’ a bit thicker than the rest. This stem contains a tiny storage system of a hormone called Levonorgestrel.

This hormone is also used in contraceptive pills. In the Mirena, however, a much lower dose is released than take the Pill (about 1/7th strength), and it goes directly to the lining of the womb, rather than through the blood stream where it may lead to the common progesterone-type side effects.

Although the IUD was originally developed as a contraceptive, the discovery that it leads to much lighter periods was seen as a bonus. Many gynaecologists now suggest the Mirena as a treatment for heavy periods if tablet treatment doesn’t work.

After 3 months use, the average blood loss is 85% less, and by 12 months the flow is reduced by 97% every cycle About one third of women using the IUS will not have any periods at all. There is no ‘build up’ of blood, because the hormone in the IUD prevents the lining of the womb from building up at all.

Negatives of the Mirena Coil

There are many who feel that the Mirena Coil is very unsuitable as a treatment for Endometriosis as this particular type of Coil increases the risk of developing ovarian cysts.

It is the use of synthetic Progestogen hormones used in the coil that increase the chance of benign ovarian cysts. This is more common with the higher hormone levels associated with the progestagen-only pill. Overall the risk is about 3 times higher. The device could also lead to other complications of infection in the womb.”

As informative as this is, there are no mention of the possible side effects.  Details of this can be found here: http://www.netdoctor.co.uk/medicines/100001706.html

“Medicines and their possible side effects can affect individual people in different ways. The following are some of the side effects that are known to be associated with this medicine. Just because a side effect is stated here, it does not mean that all people using this medicine will experience that or any side effect.

Very common (affect more than 1 in 10 people)

  • Change in menstrual bleeding, such as spotting, lighter bleeding or stopping of bleeding.
  • Development of fluid filled sacks (cysts) in the ovaries.

Common (affect between 1 in 10 and 1 in 100 people)

  • Depression.
  • Nervousness.
  • Headache.
  • Decreased sex drive.
  • Abdominal pain.
  • Nausea.
  • Acne.
  • Back or pelvic pain.
  • Painful periods.
  • Breast pain or tenderness.
  • Vaginal inflammation or discharge.
  • Weight gain.

Uncommon (affect between 1 in 100 and 1 in 1000 people)

  • Mood changes.
  • Abdominal bloating.
  • Migraine.
  • Hair loss or hair growth.
  • Skin reactions such as rash or itching.
  • Pelvic inflammatory disease.
  • Inflammation of the womb.
  • Inflammation of the cervix.
  • Excessive fluid retention in the body tissues, resulting in swelling (oedema).

Rare (affect between 1 in 1000 and 1 in 10,000 people)

  • Perforation of the womb.

The side effects listed above may not include all of the side effects reported by the medicine’s manufacturer. For more information about any other possible risks associated with this medicine, please read the information provided with the medicine or consult your doctor or pharmacist.”

OK so far?  Now it’s worth speaking to people who have had experience with the Mirena Coil – if only to know things that the doctors may have failed to mention.  For instance, I would recommend taking a paracetamol before your appointment for insertion.  While I didn’t find the experience as bad as my endo pain, the pain was significant enough for me to mention to friends who are considering the coil.

Ultimately, my experience with the Mirena Coil was less than satisfactory.  I had one inserted and it twisted my bowel in two places.  Within just a few months I was having another surgery, partly for my polycystic ovaries and partly to untwist my bowel and partly to remove that awful coil.

I know the coil feels a lifesaver for some.  Knowing what I know now, I probably would have tried the thing again in desperation for relief from my endo pain.  However, if you are aware of the risks involved, you are more likely to demand the correct treatment in your follow-up appointments.  Information is vital.  Don’t make decisions in haste.

Wishing you a healthier tomorrow

Foxy

Hysterectomy not cure for Endometriosis

I just love this website: http://www.endo-resolved.com/hysterectomy.html ! It has a common-sense approach to many of the questions I have about endometriosis.  Today’s topic: endo and hysterectomy chosen specifically for C’s sister.  Please see below:

“For many women, a total hysterectomy is advised by their doctors if they have severe Endometriosis. These women are hopeful of gaining relief from the pain and symptoms of this disease by having a hysterectomy. This advice is fuelled by the thinking that if you remove the diseased organs then you will remove the disease. This is not the case.

It is known that the implants, and the evidence of Endometriosis can be found all over the pelvic cavity. So removing the uterus and ovaries will very often leave some of the disease behind. Some surgeons will attempt to remove the disease which is scattered around the pelvic cavity, as well as removing the reproductive organs. But even so, this can still leave undetected or microscopic implants behind.

Some women as young as their early 20s are opting for a Hysterectomy as a means to gain relief from Endometriosis. It is doubtful whether these young women are aware of the possibility of a return of the disease. Then there are the problems of dealing with a surgically induced menopause at such a young age. These women will be prescribed synthetic hormones (hormone replacement therapy) for years, only to have to deal with all the side-effects they can bring.

There are many reported cases where a woman has had a total hysterectomy (removal of uterus and ovaries) as treatment for Endometriosis, only to be given hormone replacement therapy. This can encourage the disease to flare up again, because estrogen is part of the hormone replacement therapy, and endometriosis feeds on estrogen. Of course hormone replacement therapy is prescribed to replace the hormones that are lost because of the removal of the ovaries. This begins to turn into a vicious circle. So hysterectomy is not the answer for Endometriosis no matter what stage the disease is at.

Why is this situation allowed to continue? There are many newly qualified gynecologists, surgeons, and doctors who are still taught that the only way to ‘cure’ Endometriosis is either through pregnancy or menopause. So, drugs are prescribed to try and induce a woman’s body into a state similar to pregnancy or menopause, and if that does not work, then cut the disease out.

Firstly the ‘cutting out’ is done by remedial measures to try and cut out the growths, lesions, and implants. As a last resort the whole lot is taken out and women are mistakenly advised to have all their reproductive organs removed with a total hysterectomy.

There is plenty of information that these doctors could use to alter their methods of treatment, but there will be a myriad of reasons why this does not happen.

Endometriosis after Hysterectomy

If you are a woman with Endometriosis which is severe, and have been advised to have a hysterectomy, then please be advised that this may not be the correct path to take. This may not remove the symptoms. It is not a guarantee to remove the disease. It is not a guarantee that Endometriosis will not return. So why go through the agony and risk of such a serious procedure. There are many women who have gone down this path and have had a total hysterectomy to try and be rid of Endometriosis, and many of these women have seen the disease return.

The alternative here is to improve your general health so that you have a better chance to fight this disease. You can keep your body intact, maintain your reproductive function, and retain the natural chemistry and balance of your body.”

As for me, at one point I was so desperate for an end to pain that I begged my gynaecologist for a hysterectomy.  Begged!  I’m grateful now that I was denied.  While I still regularly battle with my symptoms, I’m reasonably healthy and working towards only having a period four to five times a year.  I may have to demand several more surgeries to clean out the worst of the endometrial cysts before I’m through, but at the moment I am in control of my life and my pain.  I try to ensure that I only experience pain on my terms and I have all this while maintaining a fantastic intimate life with my husband.  Unfortunately I will never know what life in a “normal and healthy” body is like but having control over my pain while still feeling like a woman is, I know, the best I can achieve without a cure.

Wishing you all a healthy tomorrow!

Foxy