Post Surgery Day 7

I feel great!

I went back to work today without any problems. 9am-5pm including two 15min walks. I had panadol and ibuprofen in the morning and the afternoon. I still haven't noticed any Mirena side effects except for slight bleeding.

On Friday I got bored and went on my first post-surgery excursion in the afternoon. I went to the library and some surrounding shops. I felt pretty sick and needed to sit down quite frequently due to pain. I ended up being stuck in the city for a lot longer than I expected and got completely worn out and felt awful!

Saturday night I managed to clean up the house and at night I was still well enough to go out to the theatre and have a couple of drinks (I was off the heavy meds by this stage!)

Sunday I spent lying in the sun and well... anyone can do that! Although, I do now have a sunburn to go with my stitches.

My stitches are tiny! Two tiny little crosses either side of my belly like a cartoon.

My belly button, on the other hand, is a bit more of a war site.

I attribute my speedy recovery to a fantastic surgeon, brilliant nurses, a wonderful partner, the sweetest cat in the world and having regular doses of arnica every day after the surgery.

I hope everyone else's goes as smoothly as mine!

Post Surgery Day 3

I got my discharge summery report back from the hospital today. They had to remove part of my pelvic wall on my the left hand side because the endo was so bad. They did explain this afterwards- and show me pictures- but I was probably too high to understand. Still no pain on that side though.

I have been in more pain today. I assume it's because my anesthetic has worn off. I'm not sure if it's pain from the op or pain from the Mirena. I get quite hot and feverish for short periods of time- but only a couple of times a day.

I'm starting to feel more myself again. I have more energy. Tomorrow I'll be up to reading a book, painting a picture- making something. No more naps and B grade movies for me!

Oh and I managed about 10 minutes out in the garden today too.

Post Surgery Day 2

I'm doing really well. I'm actually quite surprised. I had expected my recovery to be as awful as when I had my appendix out last year. I have some cramping and occasional sharp pain but I have meds to handle that. I was having hallucinations from the hospital meds but they've settled down now and I'm only having a few lucid dreams. I'm still quite light headed and tired and need to be resting most of the time. Unfortunately, the meds make my vision blurry so it's hard for me to read my books but I have lots o movies to watch- it's amazing that this is my biggest problem!

I haven't even noticed the Mirena (apart from very, very minimal bleeding). The shoulder pains from the gas that they inflated my belly with is only just coming now- it's just uncomfortable more than anything.

I'm due to go back to work on Monday and that should be fine. I'm still quite overwhelmed with how smoothly everything went and how amazing the staff at the hospital were. The anesthetist even said to me "we're going to take really good care of you, we'll have someone by your side the whole time."

Tried to go out to my vege garden for a look today. I was able to get out there for about 5 minutes. Tomorrow I'll try for longer. Mr Big and Gingin have been taking excellent care of me too.

Post Surgery Day 1 -UPDATED

I did it!

Surgery seemed to go really well. I'll start at the top.

I left my phone at work on Sunday so went and got it in the morning and came in to the hospital early at around 9.30am (they asked me to come at 10am for surgery at 12pm).

Shortly afterwards, I was taken through to have my blood pressure checked and to have a pregnancy test. Then back to the waiting room.
Mr Big split his time between work, looking after me and checking on Gingin at home.

At 12.30 they called me through to gown me up Mr Big managed to get back in time to say goodbye and wish me well before I was lead into..... my next waiting room! But only for a little while. The anaesthetist greeted me there, went through my medical history and allergies, lifestyle etc and explained the process of anaesethic really clearly and thoroughly.

My surgeon, Dr. Kristian Locke, came in next. I mentioned I had some questions (I had written them down but forgot to take my list out of my bag when they took it for me).

Which technique to remove cysts? Dr. Locke said she would be "peeling" them off so that there is less chance of damage to the ovaries.

Will they take a biopsy for testing? Yes. They'll also test the different kinds of cysts and tissue removed. Everything will be checked under a microscope.

Does Mirena increase cyst development? Yes, but only the development of normal cysts that come and go in the body, not endometriotic cysts. I also think she may have said that if the Mirena stops the menstrual cycle then the cysts stop developing as well but don't quote me on that- I'm still rather drugged up!
Can the insertion of Mirena damage the cervix? Nope.

Dr. Locke went over the details of the surgery and the Mirena really thoroughly and clearly as well. Both women were lovely and completely calmed my nerves. When I was taken into the surgery room (around 1pm) the team greeted me and were calm, relaxed and charming. They again checked my blood pressure and put a drip in my hand, undid the back of my gown and put those little sticky things on my chest and my back. I was appreciative of their attitude, they made so comfortable.

I don't remember being given the anaesthetic. I don't think I counted backwards this time. I was already pretty tired and probably fell asleep straight away.

I woke up around 3pm back the final waiting area I had been before with a nurse at my side. I reminded myself not to say anything ridiculous under the medication- but I think I may have said this out loud...
Dr. Locke came to see me briefly (asking first if I could handle a conversation yet). She seemed really pleased and said that she had removed cysts from both ovaries. When I was involved in a good conversation with two of the nurses they decided I was awake enough to be taken to my ward.

I'm in a private ward, hooked up to a tramadol drip with a button to press whenever I need more pain relief. The nurses check my blood pressure, heart rate and temperature ever 4-5 hours. The pain is quite bad so I stayed here over night but the tramadol is keeping it mostly at bay. I also have oxygen hooked up to my nose. OH! And they made me a vegan tofu curry for dinner!!!

I feel really blessed to be in New Zealand and have such a high standard of free health care. Everything seemed to go great and I have been looked after so well.

I'm still quite sore and the tramadol is making me so itchy (histamines) and I can't get out of bed yet. My tummy doesn’t look too swollen. I was able to eat and drink. Last night I got a bit feverish but not for very long and it was the only time I needed something for nausea. No throat pain from the tube as yet, no shoulder pain from the gas yet either.

Dr Locke will come to see me a few hours or so to discuss the operation in more detail.

UPDATE: Dr Locke just came to see me. She said that my left side was actually much worse than my right even though that's where the most pain has been and the only place they could see the cysts when they did the scan. She said I definitely have endometrisis cysts but I don't have the chocolate endometrioma cysts that they were expecting. I have some narly photos that I will scan and put up via a link so you do't have to look if you don't want to!

1 Day to Surgery

Deep breath in...

Deep breath out...

Being in so much pain the past few weeks has actually been really helpful. I definitely want this surgery. I'm excited to know what's actually happening in there- but nervous too.

Knowing me, there wont be much of anything or it will be severe. I don't seem to ever have a middle ground in anything.

I went to the last endometriosis support meeting in Wellington where they had a surgeon discuss the surgery and how to prepare for the day. Her main advice was to prepare a list of questions to take in for the surgeon and the be very direct with them.

I'm lucky enough (hmm) to have had a laparoscopy before, for my appendix last year. I have a fair idea of what to expect in that area.

My main questions are:

Which method are they using to remove the cysts?

Cysts can be removed three ways:

Excision: Cutting away and removing the tissue
Coagulation: Destroying the cysts by burning them using a diahemery (to electrocute them) or a laser (to vapourise them).

Research is still being done to see which technique is better. Out of the two options for coagulation, the laser seems to better as it's more precise and less likely to cause tissue damage. People seem to be agreeing that excision is more effective on the whole.

I'll need to ensure that they are in fact going to take tissue for diagnosis.

Diagnosing- Visual Inspection vs Biopsy: They will look for the characteristics of the disease and visual indications during surgery and/or take tissue for testing. As long as the surgeon is well educated and experienced in what endo looks like, visual inspection should be enough apparently. I think biopsy should be done too. Tissue is taken to be viewed under mircoscope so they glands and stroma can be inspected.

In animal tissue, stroma (from Greek στρῶμα, meaning “bed, bed covering”) refers to the connective, non-functional supportive framework of a biological cell, tissue, or organ.

A gland is an organ in an animal's body that synthesizes a substance for release such as hormones or breast milk, often into the bloodstream(endocrine gland) or into cavities inside the body or its outer surface (exocrine gland).

I'm going to try to get to the library today to get some books. I have films to watch. The house is clean. I have someone to pick me up from the hospital and to look after me. I have fresh fruit and veges. Oh, and as of yesterday, I have a kitty to keep me company.

Haere mai Gingin

So... I'm ready then.

Let's hope I actually get the surgery this time!

Sources:
http://www.answers.com/topic/laparoscopy-for-endometriosis

http://www.endometriosis.org/laparoscopy.html

http://www.endometriosis.org/endometriosis_surgery.html

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

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

http://www.thewomens.org.au/TreatingEndometriosiswithLaparoscopy

http://www.womens-health.co.uk/endo2.asp -has some icky photos- you have been warned.

http://www.bioscience.org/books/endomet/endomet.htm

http://www.centerforendo.com/endoq&a.htm

3 Days to Surgery

I have been killer sore.

I don't know if it's part psychological because I'm having surgery soon or maybe I'm more aware of it. I think I've spent years ignoring it and getting used to it- now I'm finally seeing just how frequent it is.

When I was 13 I was told that it would all settle down in a year in two and that it was all normal.

When I was 16 I felt like I was being treated like a silly teenage girl, overreacting to the pain. Mum took me for scans around this time and cysts showed up but we were told they were normal for a girl my age. I wonder if they're the ones I still have.

When I was in my early 20's I was told that the only time it would start getting better is after I have children.

Awesome.

And here I am. About to go under the knife. I'm terrified.

I've been having so much pelvic pain (mid-cycle). Yesterday was the worst. Every morning it feel like I'm in more pain, more bloated and sick than the morning before. Now that I know cysts can rupture I can't stop thinking that it's happening to me. Sometimes the less you know the better!

5 Days to Surgery

Getting close to surgery day. I'm interested to know what they're going to find in there.

Cysts? (Well I know there's one big endo cyst already). Blocked Fallopian tubes? Lesions? Adhesion? What is it all anyway?

Lesions/Implants: This is the one I've found hardest to find information for. Lesions are abnormal tissue growth caused when normal tissue is damaged. The term is lesion is very broad and covers thousands of varieties, for example, chickenpox, tumours/cancer, ulcers, hives, and acne. The most common places endometrisiosis lesions are found are ovaries, the outside wall of the uterus, fallopian tubes, pelvic cavity, and reproductive organ ligaments.
The diagnosis of endometriosis is done by the biopsy of these lesions, (although, endometriosis can be unofficially confirmed by visual inspection of the lesions but not with everyone).

"Endometriosis lesions react to hormonal stimulation and may "bleed" at the time of menstruation. The blood accumulates locally, causes swelling, and triggers inflammatory responses with the activation of cytokines. It is thought that this process may cause pain."-Wikipedia

Q. What does endometriosis look like?
A. The presence of endometriosis is characterized by blue-gray lesions on the peritoneal surface, over the pelvic peritoneum or pelvic structures. This distinct appearance can be attributed to the encapsulated menstrual blood and menstrual debris. However, the appearance is critically dependent upon the longevity of the tissue implanted. The initial appearance may be just an irregularity or discoloration of the peritoneal surface. Initially, these lesions may appear tan or hemorrhagic in colour. After establishment of viable endometrial transplant and menstrual shedding, the presence of entrapped menstrual debris gives the tissue the typical blue-gray and powder burn appearance.
Many times the lesion of endometriosis may not have any colour at all. These lesions are called nonpigmented endometriosis.-bioscience.org

Adhesions: These are fibrous bands that look like cobwebs that form between tissue and organs, causing them to stick together abnormally, such as the ovary to the pelvic wall. This causes pain and discomfort but can also lead to infertility. These all need to be removed during surgery and prevented from recurring. The cause is uncertain but it's likely caused due to a mini menstruation from the legions mentioned above. Since that's happening in the wrong place the blood has nowhere to go and is trapped, causing inflammation resulting in adhesions.

Blocked Fallopian Tube: Or as I like to call them, The Symptomless Satan.
This is where there is an obstruction in the fallopian tube that is preventing an egg to travel down. It is the cause of infertility for 40% of infertile women. This can be caused by endometriosis, pelvic inflammatory disease (PIT), appendicitis and previous surgery and... Umm... Chlamydia (among others). Surgery can be used to remove the obstruction. There are rarely any symptoms.

Endometrioma, endometrioid cyst, endometrial cyst, or chocolate cyst of ovary: Heads up- this part is pretty gross and not for the faint hearted.

Legions of cell, menstrual flow and debris are transported from the uterine cavity and cause cyst on the outside of the ovaries. These contain a brown liquid (oh my f**king god...). If they remain small (less than 3cm) they can be fine, with no symptoms but if they get big they cause pelvic pain and discomfort. The can go up and down in size- they’re even reports of baseball/grapefruit sized ones- eek! If they rupture the... err... contents... can spill into the pelvic cavity and cause organs to bind together, causing infirtility.
Mine is on my right ovary. Last December it was 5cm according to the scan, then they checked it in 6 months and it hadn't gone away, hence my surgery.

I found this video of an endometrioma (cyst) during laparoscopy, I wasn't brave enough this time either, but you might be! http://www.operationalmedicine.org/ed2/Video/Chocolatecyst.mpg

Sources:
http://www.nzendo.co.nz

http://en.wikipedia.org

http://www.americanpregnancy.org/womenshealth/endometriosis.html

http://infertility.about.com/od/causesofinfertility/a/blocked_tubes.htm

http://www.micronutra.com/journal/endometriosis/chocolate-cyst-the-endometriosis-cyst

http://www.drmalpani.com/book/chapter18.html

http://www.alternativesurgery.com/education/ovariancysts.php

The most helpful by far was:

http://www.bioscience.org/books/endomet/end01-33.htm#23

7 Days to Surgery

Mirena

I've read a lot about Mirena over the past few days and now I have myself completely freaked out about it. Some of the info I've read on the net has been awful. Some has been positive. The one person I know who has had it was positive about it.

There isn't much information out there from people using Mirena that haven’t had children. The biggest thing I'm concerned about is it it's, err, insertion. I feel sick at the thought of it. I will be completely under anesthetic but I've got this crazy idea (hopefully crazy) that my cervix is going to get damaged. It's only small and not meant for such things! I keep thinking that it's going to get... grazed, or torn... or...something awful, gruesome and f**king painful.

I'm also anxious about the surgery. I'm scared that something will go wrong and my ovaries will get damaged and I'll end up not being able to have children. That's my biggest fear in all of this. If not from the surgery, then from the disease. I refuse to be sat down for that conversation from the doctor post-surgery.

I guess all this anxiety is normal. I just need to talk to the surgeon to calm my fears.This time next week I would have had surgery. Phew.

I do find Mirena pretty fascinating though. A tiny weenie bottle of hormone- drip fed inside my body- fascinating... and... disconcerting.

The Mirena brochure is really good: http://www.mirena.co.nz/html/pdf/Mirena-booklet.pdf

The Mirena website also has an... insertion video... I wasn't brave enough but if you watch it tell me what you think!

Sources:

http://www.mirena.com
My Experience: Mirena Birth Control

http://www.medic8.com/healthguide/articles/mirenaiud.html

http://www.rxlist.com/mirena-drug.htm

9 Days to Surgery

Caffeine

I had heard that women with endometriosis should avoid having caffeine. I assumed that it was to do with causing dehydration. I had no idea just how serious it was.

It turns out that caffeine increases the production of estrogen- not only that but it also prevents the liver from being able to rid itself of excess estrogen at the same time! The estrogen it is creating is estradiol- which is the one that causes endometrial cell growth.

Too much caffeine also causes adrenal fatigue. The adrenal glands are vital in the production of progesterone which counteracts with estrogen. Basically, caffeine causes all this estrogen to come in and blocks anyway of it getting out of our system! That leads to endometriosis growth, fatigue, bloating, back and neck pain, and depression.

Everyone is different but I've definitely noticed the negative effects of caffeine. With endometriosis it's difficult to know exactly what the catalyst is for the symptoms mentioned above. When I have too much coffee I have those symptoms and I also feel lathargic and dizzy but most significant for me is an abdominal cramping- somewhere between my ovaries and my kidneys.

Yesterday: 1x Flat White, 1x Mocha
Today: Bloated, nauseous, sore
Bleh!

(I had two coffees the day before yesterday too!)

Bye-bye coffee.

Hello green tea.

Sources:

http://www.e-healtharticles.com/Detailed/6801.html

http://womenshealth.suite101.com/article.cfm/coffee_and_estrogen_dominance

10 Days to Surgery

Fatigue

It seems that the cause of fatigue for endometriosis sufferers hasn't been figured out yet. Most likely it's because our bodies are constantly working in overload; dealing with chronic pain, constant inflammation, the bodies fight to rid itself of the trapped fluid as well as nights spent in pain that you just can't sleep through.

The only suggestions to combating fatigue have been the plainly obvious:

• Get enough sleep
• Eat well
• Don't overexert yourself.

Gee- thanks... helpful...

Some people have also said that a B12 shot helps, others recommend Vitamin D. At the moment I'm finding exercise (yoga in my case) and meditation the most helpful.

I work a lot- I always have. I'm constantly on the go and it's difficult for me to comprehend limiting myself. Especially when I'm trying to convince people that endometriosis is not and will not affect my performance at work. I eat well. I usually sleep through the night except a couple of times a month when I wake up in pain.

I generally wake up feeling great and start to get really tired in the afternoon, then I'll have a surge of energy for a wee while and get really tired again around 6pm (that energy surge is generally from coffee which is a bit of a no-no for endo, more on that later). Much to MrNZwithEndo's annoyance I can never make it to the end of a movie without falling asleep.

For me the hardest to cope with is the dreaminess of the fatigue, the lack of focus and concentration. I'll forget what I'm looking for, where I've put things, what I was about to do. I'll be reading a book and suddenly realise that I have been day dreaming for ten minutes. I'm a creative person and to be honest, I live in my head too much as it is without all of this adding to it!

This is where the meditation and yoga comes in. It's perfect for pulling me back to the present moment. Breathing meditation has been fantastic for pain too. When I slow my breathing down, my pain not only subsides but I also feel calmer, all my muscles begin to relax and my state of mind softens so I know that I'm going to make it through. It helps me to work with my body rather than being ruled by it. I only wish I had discovered this years ago!

I also found this interesting fact sheets today:

http://www.endometriosis.org.au/images/stories/Education/Documents/endometriosis.pdf

And this is the same but in mp3 format:

http://www.jeanhailes.org.au/images/stories/podcast/endometriosis.mp3

Sources:

http://www.endo-resolved.com/fatigue-article.html

http://www.micronutra.com/journal/endometriosis/why-does-endometriosis-cause-fatigue

11 Days to Surgery

I was actually supposed to have surgery a few weeks ago on the 29th of October. I spent four hours in the waiting room before being gowned up. As soon as I was gowned and ready to go the nurse came in to say that there had been an emergency and my surgeon was now unavailable. I was upset at the time, but understanding of course. I had spent all that time waiting, worrying, psyching myself up. It's worked out well though. I wasn't quite ready to have the surgery then. I had only two weeks notice from the hospital as they had a cancellation.

I've been in a lot of pain over the past month. I'm not sure if it's partly mental or I'm just more aware of it because I'm getting so close to surgery day. I've been bloated in the mornings and I've been tired during the day. I've had a new pain sensation too- a burning around my ovaries. PMS cramps have been chronic. I'm lucky to have a really supportive partner though to hold my hand. He usually wants to take me to A&E when they're at their worst but I know that by the time they even get around to seeing me the pain would have probably subsided. They can only give me a shot of something anyway. I've found the best for pain to be Ponstan and hot water bottles/wheat packs it takes the edge off but really I just have to ride it out for a couple of hours.

What works for you?

ps: found this great article: http://drhotzeblog.netymology.com/2006/09/21/understanding-endometriosis/

NZwithEndo

I'm a 25 year old Wellingtonian and soon I'll be having a laparoscopy to diagnose endometriosis as well as a Mirena implant. I found it difficult to find information about the surgery, condition and recovery so I'll be blogging my post surgery experiences here for those of you who are embarking on the same journey.

I had suspicions for about three years that I had endometriosis and had checked with medical professionals about it but found it difficult to get someone to actually look into it.
In December 2008 I had an acute appendicitis and it was during the scans for this that the hospital saw a cyst (endometrioma) on my right ovary. After six months the cyst was checked again and it had enlarged- subsequently I am booked in for surgery to have it removed on the 23rd of November.

Endometriosis can only be diagnosed through surgery as the legions and adhesions can not be seen through a scan. It may be that I have an endometrioma and not endometriosis. I hope so- but I have about 90% of the list of endometriosis symptoms.

• pelvic pain
• nausea, vomiting, fainting, dizzy spells, vertigo or diarrhoea—particularly just prior to or during the period or after
• frequent or constant menses flow
• chronic fatigue
• heavy or long uncontrollable menstrual periods with small or large blood clots
• some women may also suffer mood swings
• extreme pain in legs and thighs
• back pain
• mild to extreme pain during intercourse
• extreme pain from frequent ovarian cysts
• pain from adhesions which may bind an ovary to the side of the pelvic wall, or they may extend between the bladder and the bowel, uterus, etc
• extreme pain with or without the presence of menses
• mild to severe constipation

Not pretty? Mildly embarrassing? Maybe that's why nobody's talking about it?

From endometriosis.org.au:

What is endometriosis? Endometriosis is a common condition. The tissue that normally lines the uterus (also called the endometrium) is found in sites outside the uterus. This misplaced tissue is commonly found on the ovaries or the tissue lining the pelvis (peritoneum), however it may also be found on the uterus, bowel, bladder, utero-sacral ligaments (bands of tissue at the back of the uterus that hold the uterus in place) and in the Pouch of Douglas (the area between the uterus and the bowel). The misplaced tissue implants itself onto the surface of the tissue or organ where it has been deposited and begins to grow and function. These implants (also known as patches or deposits) respond to the hormones of the menstrual cycle in the same way as does the lining of the uterus (endometrium). Like the endometrium, the implants thicken and swell with blood in order to prepare for a possible pregnancy. If a pregnancy does not occur then both the endometrium and the implants break down and bleed (the period). Unlike the lining of the uterus, the blood from the implants cannot escape from the body during a period, so it bleeds directly onto the surface of the surrounding organs and tissues. This causes irritation which leads to inflammation, scarring and, sometimes, the development of adhesions between organs so that they stick together. On the ovary, the patches can increase in size and burrow in to form cysts, known as chocolate cysts or endometriomas. Unlike the lining of the uterus, the blood from the implants cannot escape from the body during a period, so it bleeds directly onto the surface of the surrounding organs and tissues. This causes irritation which leads to inflammation, scarring and, sometimes, the development of adhesions between organs so that they stick together. On the ovary, the patches can increase in size and burrow in to form cysts, known as chocolate cysts or endometriomas. How common is endometriosis? Endometriosis is thought to affect approximately 10 per cent of women (one in 10) at some stage during their menstruating years. It can occur anytime, from when periods start, right up to the time of menopause. It rarely continues to be active after menopause but occasionally, may be reactivated by hormone therapy after menopause. In rare cases, endometriosis may develop into cancer. Endometriosis can have a major impact on quality of life with the symptoms interfering with work, relationships, family and overall health. One of the main issues is that there is often a delay in diagnosing endometriosis and some women have symptoms for many years before treatment is started. What causes endometriosis? The causes of endometriosis are not fully understood and there may be many reasons why it occurs in about 10 per cent of women. Potential causes include genetics, especially if there are other family members with the condition, problems with the immune system and possibly environmental toxins (yet to be proven). Retrograde menstruation is considered the main source of endometrial cells reaching the pelvis and pelvic organs. Retrograde menstruation is when lining cells from the uterus, which are normally shed during the period, flow back along the uterine (Fallopian) tubes into the pelvis where they become implanted and begin to grow. This theory could explain why implants are most commonly found on the ovaries, or near the end on the uterine (Fallopian) tubes. However, it does not explain cases where endometrial cells are found outside the pelvic cavity.

EEK! I'll let you know how it goes! xxx