Coping with Endometriosis pain

Having woken up this morning with what I generally call a "bad Endo day" I thought to myself; why don't you share some coping tips/tricks you use to make the day slightly better?

So here they are.

I generally find that an electric heating pad works for helping relax those tight muscles and keep the bad spasms away. It helps if you can do a breathing technique to control the breath so you don't tense up when a spasm does occur. I have one similar to this, it has three setting switches off automatically after 90 mins so as to avoid over-heating and I haven't had any burns like some people get from them. It's normally a good idea to keep the pad over clothing such as a light t-shirt or pyjama top though as having it too close to the skin can irritate it.

Now just because Endometriosis is associated with the pelvic area does not mean that women don't experience pain in other parts of the body. For example, I personally experience lower back pain, shoulder pain and leg cramping that comes from my Endo.

A good tip I've used for leg cramping is to elevate them normally with a few pillows or cushions and try get the legs up slightly higher than the heart. This aids blood flow and helps reduce the cramping. Massage is also very beneficial for muscular tension but you should always check with your G.P or medical professional as some people are contra-indicated for a number of different reasons. But, if you are able to have massage then you may find it to be very helpful with easing tension and creating a state of relaxation and well-being.

If like me, you are open to alternative medicine or herbal remedies the following have proven useful for coping with Endometriosis;

Acupuncture is part of Traditional Chinese Medicine. Combined with traditional herbal medicine many women have gotten relief from this treatment. Acumpuncture practitioners insert sterile needles into specific parts of the body to treat a number of disorders. The specific points in the body that are used vary from person to person but common points used in the treatment of Endometriosis include the ears, wrists, feet, legs, back and abdomen. The needles are usually left in for twenty to forty-five minutes. Prescribed Chinese herbal remedies are individual to each person depending on your level of pain/discomfort and where you are being physically affected.

Aromatherapy has been around for thousands of years. When incorporated with massage it helps ease muscle tension. A chronic condition causes stress, anxiety and with any long-term pain muscles tense up. Some good essential oils used to help aid relaxation include Lavender, Geranium, Patchouli, Ylang Ylang, Clary Sage and Orange.


T.E.N.S ( Transcutaneous Electrical Nerve Stimulation) is becoming more common amongst chronic pain sufferers. It is a drug-free method of pain relief that has been known to help in a wide variety of muscle and joint ailments.

You can have a T.E.N.S session under the supervision of a health care provider although many people are buying their own equipment for use at home as this method has proved to be safe, generally easy to use and non-invasive. Many pharmacies stock these machines along with some well-known catalogue retailers.

T.E.N.S machines start from around €30.00 which isn't that bad when you think of the amount you probably spend on painkillers. Before you use a T.E.N.S machine check with your G.P to make sure it is suitable for you. People will pacemakers for example cannot use these machines so it's always best to check first before beginning any new therapy or treatment.

Some studies have shown that Calendula oil pictured above) has proven to be effective in relieving pain associated with Endometriosis. The oil is applied topically and has been used for centuries as a herbal remedy. Well known for it's analgesic properties, Calendula is the ideal remedy for pelvic pain and personally I know it to work, soothe the skin and generally give a sense of well-being.

All of the above do help you to cope with the pain but you also need emotional support when dealing with any kind of chronic condition. You're not really going to wake up one day and the Endo will have disappeared like a thief in the night but you can learn to live with it and have a quality of life. The big thing I find is to stay positive throughout, whether you're undergoing treatment, surgery or having a really bad day. Find something positive about your life and focus on that. It really does help.


Other alternative treatments include Herbalism, Naturopathy, Homeopathy, and Chinese Herbal Medicine.
Before you begin a treatment check with a medical professional. Seek out an accredited practitioner, massage therapist or ask your G.P for his/her recommendations.

Now we wait

Monday just gone we had our OBGYN appointment to follow up with how I got on with the Clomid etc.

Luckily I actually got to see a Doctor I know from a previous appointment so there wasn't the usual nonsense of explaining every single detail from the past eight years or so.

We discussed the fact that I am not willing at the minute to continue with the Clomid due to the side effects. For me personally it has caused an increase in my anxiety and panic attacks which is in no way going to aid with the TTC so moving one for now.

The Doc performed an internal exam and concluded that the existing cyst on my right ovary may have grown since the scan in February so the scan will need to be repeated to see if indeed it has grown, if there's another cyst or if it's actually an Endo growth. Fun times!

I got the appointment this morning and due to the back log in the Ultrasound Dept. I won't be getting that scan until 05th November 2012. It does seem like a long time to wait especially as my right and left "sides" (ovaries) are causing a lot of pelvic pain which only began with the second round of Clomid but which has stayed even though I'm nearly two cycles off the treatment.

In the meantime however if things get really bad I've to do the usual. For me that means wait and wait and wait and wait a little bit more until I absolutely physically can't stand the pain any more and then I might just present at A and E. It sounds very careless of me I realise to wait so long when things get really bad. But, I've never been in a situation where I have not been admitted to hospital after presenting at the Emergency Dept. Now, this is more than likely due to the fact that I do wait so very long before giving in and going into the hospital but I generally think that the pain or discomfort will just pass and due to the nature of the chronic pain situation I need to be pretty bad to present as I have quite a high pain tolerance.

Anyway, will I learn my lesson? Perhaps. Or maybe I'll continue to stick it out as long as I can. After all "giving in" to this disease doesn't make me feel any better so I'll fight it tooth and nail if needs be.

A new circle has begun for us. We are still very positive and truly believe that when the times right things will happen. For now, we wait and see.

As a wise woman once told me "What's for you won't pass you".

Did you know?

Ok so by now you would assume that we'd all be a bit more aware of what causes Endo but here are some facts you may not have considered with your symptoms.

The most common symptom of endometriosis is pain in the lower abdomen or pelvis, or the lower back, mainly during menstrual periods. The amount of pain a woman feels does not depend on how much endometriosis she has. Some women have no pain, even though their disease affects large areas. Other women with endometriosis have severe pain even though they have only a few small growths.

Symptoms of endometriosis can include:

• Very painful menstrual cramps; pain may get worse over time
• Chronic pain in the lower back and pelvis
• Pain during or after sex
• Intestinal pain
• Painful bowel movements or painful urination during menstrual periods
• Spotting or bleeding between menstrual periods
• Infertility or not being able to get pregnant
• Fatigue
• Diarrhea, constipation, bloating, or nausea, especially during menstrual periods

Recent research shows a link between other health problems in women with endometriosis and their families. Some of these include:

• Allergies, asthma, and chemical sensitivities
• Autoimmune diseases, in which the body’s system that fights illness attacks itself instead. These can includehypothyroidism, multiple sclerosis, and lupus.
• Chronic fatigue syndrome (CFS) and fibromyalgia
• Being more likely to get infections and mononucleosis (ma-no-nu-klee-OH-suhs)
• Mitral valve prolapse, a condition in which one of the heart's valves does not close as tightly as normal
• Frequent yeast infections
• Certain cancers, such as ovarian, breast, endocrine, kidney, thyroid, brain, and colon cancers, and melanoma and non-Hodgkin’s lymphoma

You might be more likely to get endometriosis if you have:

• Never had children
• Menstrual periods that last more than seven days
• Short menstrual cycles (27 days or less)
• A family member (mother, aunt, sister) with endometriosis
• A health problem that prevents normal passage of menstrual blood flow
• Damage to cells in the pelvis from an infection
• These facts have been brought to you today by (Woman's Health Government Publications)

So here's a quick card if you will listing the possible symptoms. 

Please donate if you can. Thanks in advance.

Please donate if you can. Thanks in advance.

It doesn't matter how little or small. Just know you are making a difference to this cause.

Creating Awareness

I sure many of you are aware that March is Endometriosis Awareness Month. But I don't see why it should stop there. Wouldn't it be great if we each take out on initiative and create something in our home towns to coincide with a festival of some sort such as a Halloween Ball, A mid-term ball, Christmas Ball or Harvest Festival, Thanksgiving Ball all in support of Endo Awareness?

This could be a global thing. All you need to do is get organised and get involved in your own community.

The more awareness we can create the better for everyone.

I'll be back soon with more details. Until then check out our page on Facebook. https://www.facebook.com/groups/175752072552900/

Choices

Ah Provera, my somewhat not so good old friend. So we ended up in A&E on Sunday. Firstly, I had to get my day 21 Progesterone blood test & the blood clinic doesn't open at the weekends & secondly because the bleeding had become extremely heavy during the week that I thought I should get it checked out & see if it was some sort of side effect from the Clomid.

Anyway, got the bloods done, turns out I'm also very low in iron & apparently not looking after myself properly according to the nurse & two Doctors I seen in my time at the hospital.

The nurse literally got 2ml of blood from my arm, told me that my veins had collapsed & I was left with a nice set of bruises in the crook of my elbow. After a quick chat with the lab it turns out this is enough to run the test so we we're happy with that.

Then seen two different Doctors. The first got called away to Maternity for an emergency & the second Doctor (John) was so nice & helpful. Went through everything with me & came to the conclusion that my cycle had just been a very short one this month, prescribed Provera 10mg three a day for one week & then back to the Clomid once the new cycle starts.

He answered all of our questions, done an internal exam, checked out my BP, which was alright-ish & gave me a slight lecture about needing to take time for myself, to look after myself properly, not to be basically going along the way I was as my dizziness, weeping, hormones, pain in my lower back, headaches & most likely the length & heaviness of the bleeding is most likely due to stress coupled with the treatment.

So..this week I have been trying to take a step back from certain activities like heavy DIY & lifting. Which to be honest has been very difficult in a way because I pride myself on being a "hands on" person especially around the house. I feel like I'm getting looks from other members of the household that I'm not diving in the way I usually do but I have been up front, they know what's going on. I mean how else does one explain bursting into tears when they are just looked at or asked a very simple question.

I'm on Day 4 of the provera & still waiting on the bleeding to stop. The hormone"strops" are not really easing. I just seem to be like some sort of switch; crying one minute & snapping for absolutely no reason the next. It's a little ridiculous to be honest but I keep reminding myself of the purpose which most of the time keeps me going. I'm very lucky that I have such an understanding partner with me through all of this & that my family do their best to understand that I'm not always going to be bright & bubbly.

Sometimes I feel like my body has been taken over my some foreign entity & I'm getting dragged apart in the process while it has it's evil way with my emotions.

The fact that there is a chance that these treatments may cause more problems for me with the Endo that is still active has not been lost on me. However, there comes a time where we all have to learn to prioritize & now my fertility is more important.

I feel that I've been put in a position through my own choices where I've now had to put any treatment for Endo on the back burner as such & go ahead with fertility treatments in the hope of conceiving. I just trust it's the right choice for us, at this time.

Obstacle? Only if you let it be.

Day 19 of cycle/ 14 days after last Clomid tablet & I have been spotting most of this week, which turned to a heavier bleed (like day one period bleeding) & I've been getting increasingly anxious that the Clomid wasn't agreeing with my body or working, doing it's job.

After talking to K & V listening to what they had to say I rang my Gynecological ward at the hospital & spoke to a nurse who got me to explain the symptoms exactly & then told me that's it's normal with the Clomid to experience this. That the pain I've been having is a good indication of the treatment starting to work. Apparently it's my ovaries being stimulated that's creating the itchy, stabbing pain.

I cannot convey how relieved that phone call made me, how simple an act & yet how long it took me to do it.

I was literally jumping for joy that it doesn't mean the treatment has failed, seeing as I have at least two more months on it & at a higher dose.

Although in saying that the lovely Nurse also said if the bleeding gets any heavier, clots become persistently present or the pain gets too much to just come straight into them but I honestly feel like there's a bit of hope left.

It's normal! I feel somewhat normal even being able to say that. I can handle things easier if I understand the how's & why's of them. But sometimes I get so scared to ask the questions in case the answers negative or it means taking five steps back.

But I have come to the realization that it doesn't matter what the answer is we all eventually have to deal with these outcomes.

It's been really great being able to talk to my younger Sister about all of this. To have a woman's perspective who hasn't gone through any treatments like this or had these nerves about side effects resulting in the treatments not working before. To talk it out, be heard & not compared to for once was just so different that it opened my eyes up to seeing that not everything that happens to my body is necessarily a bad sign.

I have to go into the hospital on Sunday fro my Day 21 Progesterone test so I will just go over everything again, make a list of things I might have forgotten to ask in the first place because I was too scared. See if K has any questions, fears or worries & go forward from here.

It's amazing how a little reassurance can make you instantly feel more positive toward your situation. It's settled me back down in myself a bit, the anxious feeling I had all last night has also eased. I wished I had called earlier or yesterday.

Lesson learned.

A different path?

Ladies, I'm sure you're tired of being promised that this or that treatment will aid you or rid you of pain, gain your a few years without those sometimes torturous cramps, save your fertility or just give you a better quality of life.

Now those of you have been on that long list of hormone therapies, surgeries &

sometimes whatever the Doc's are pulling out of there hats have probably, like me already turned to an alternative medicine to see if it has any use.

I myself have tried TCM but while I was on a GnRH analogue so we've never been entirely sure which one worked although the herbs I was prescribed certainly helped with the side effects of the treatment so in that I can say hand on heart they worked for me.

Whilst I have not been yet brave enough to go for acupuncture I have tired homeopathic & herbal remedies & still continue to use certain one's for PMS & the general annoying pains I get from my Endometriosis.

It really doesn't matter what "stage" of this disease you have, you still suffer, it's not

fair & it's certainly not something you've brought on yourself.

*Some of the Herbal Remedies I've tried over the years are; Chamomile, Peppermint, Feverfew, Yarrow, Chaste Tree, Valerian, Hops, Skullcap, Sage & also in the Homeopathic realm I've used Belladonna, Kali. Phos & New Era tissue salts for menstruation.

*If you want to try any of these please consult with your G.P or local Herbalist first.

In no way am I encouraging you to abandon your treatment's or usual medicine but instead am just putting it out there that there are always alternative's even if to just help with side effects or improve your overall health.

Give herbs a shot, they were around first after all :-)

Remember there's always support available to us, a light at the end & always always there's hope.

Reflections (Part 1)

Finished the dose of 50mg of Clomid last Saturday, the 10th of March. First round, done & dusted.

Have had a very nauseous stomach, a little spotting & some PMS like moody moments but compared to the Endo pains & tribulations this is small change for me. So all in all I'm looking at this positively & also fingers crossed am hoping the treatment works out to our advantage over the coming months.

Things in general have been quite turbulent the past few weeks & at times I do wonder if we'd made the right choice to begin treatment for the infertility problem now but if not now after almost two years of TTC then when?

Is there ever a right time to be pregnant, be trying, give birth? Or does everything happen in it's own time & for it's own reasons.

One has to wonder, even if we don't always have the answers to the questions, it doesn't cost anything to ask. I just need to be happy in the knowledge that I won't always have the answers & neither will anyone else.

Doctors have been "buying time" with me for years, almost 9 now & from being told at 18 that I would never conceive to now being given that chance has flipped the odds in my favor.

I certainly was in no way prepared at 18 to consider having a child, nor did I want to at that time. I was in college, looking forward to my career & so forth & was convinced that it wasn't the choice for me.

Now however, it's a different kettle of fish as it was two years ago when I had that moment where I though I could be pregnant but obviously it turned out to be a falsehood. That started us on our journey, asking questions having tests & so forth. Going off & trying the natural root with a little apprehension because of the past comments by Medical Professionals. But it hasn't stopped us. The Endo is always somewhere in our minds but honestly it doesn't "control" me anymore.

It's been difficult at times to not let it constantly get in the way and of course there are days, hours, minutes where all of my positive thoughts go out the window with the pain I'm in but I know there's got to be an end goal. There's always something I can do to be proactive about this disease whether it's talking about it, writing about it, accepting treatments, medical, natural or otherwise.

If you can keep finding a way to move forward you'll get there eventually. It's like a marathon-pace yourself.

Clomid Day 3 First Round

Day 3, feeling crampy, nauseous, irritable, tired & weepy.

Plus side?? Only two more days to go for this month.

Ick.

BP is a lot higher today but am going to take a few readings today in case it's due to some anxiety I am currently experiencing. I was reading at 153/98 which is higher than yesterday's reading of 132/88 so shall just wait and see & hope it was a fluke.

Also, at the time of my reading my pulse was coming out at 108 so definitely am hoping this is due to the time I took it at even though I felt very calm & "Normal".

Fingers crossed it's lower later.

Till tomorrow.

March is Endometriosis Awareness Month!

Ladies,

In case you don't know yet March is the month to create some awareness about Endometriosis.

There are plenty of great sites out there with a lot of information on this invisible

condition & also some excellent support forums for women to talk to others who are going through similar experiences to themselves.

So how do we create awareness?

* Talk openly about the condition. The more women that know & understand the symptoms of Endo the more that can get checked out.

* Talk to your local G.P about putting up some posters around the office supporting Endo Awareness.

* Organise a fun run or local charity fundraiser in support of Endo.

These are just a few ideas of how to create awareness in your local community.

The symptoms of Endo include;

~ Pelvic pain before, during or after menstruation

~Pain during sexual intercourse

~Pain in the lower back region

~Pain while passing urine or pain in the bowel during menstruation

Other symptoms include;

Painful, heavy periods. Bloating of the abdomen, diarrhea or constipation (connected with timing of the monthly period) & fatigue.

Another well-known symptom connected with Endometriosis is

Infertility. Approximately 30-40% of women diagnosed with Endometriosis are subfertile. (endometriosis.org)

So far, there is no cure & scientists are not conclusive on what cause Endometriosis.

The good news?? - YOU CAN FIGHT IT!

There's a great video link at http://endometriosis.org/endometriosis/symptoms/

for anyone who needs more information, especially one from a medical point of view.

There are a variety of treatment for this condition & everyone's experience differs somewhat i.e their own level of pain, symptoms & response to treatment all varies with each patient.

Our goal is to make people more aware of the condition, to talk openly about it so women do not suffer in silence.

These are some great sites that I personally have found useful over the course of my fight with Endo;

www.endometriosis.org

www.endosupp.com

www.endometriosis.org.uk

www.endo-resolved.com

www.endo.ie

For the entire month of March I will be writing a new blog every few days with more & more info on Endo, covering treatment options available (some I've tried), support networks & how to live with Endo.

{If you require medical attention seek out a G.P or local Emergency Room. These opinions are my own & no information given is to over rule or counteract medical advice.}

Treatment Day 2

So I took my first Clomid yesterday. Nothing magical happened, there are no special effects here friends. I wasn't bathed in light & sparks were indeed NOT shooting out of my fingertips. Other than some nausea & cramps though I didn't really notice anything which is a good thing I'm sure.

Had my second pill this morning with breakfast & so far no nausea ( maybe I should eat something small with the tablet to counteract this affect.)

On the Endo side however, I had a very bad day yesterday which extended into the night & followed through to today. But in some ways the fertility treatment is giving me a new focus, a new positiveness if you will albeit a tad cheesy sounding.

I think with this condition that you have to learn to take each day as it comes. It's not going to disappear overnight, it's not going to kill me, but it's going to be incredibly rough at times. Just need to stay positive, focused & aware.

Don't forget MARCH IS ENDOMETRIOSIS AWARENESS MONTH!

LIGHT A CANDLE FOR ENDO OR WEAR SOME YELLOW :-)

New Chapter

Ok so we as a couple have been going through a lot the past few months & between hospital visits,a HSG, lots of Progesterone tests, ultrasounds; both types, G.P appointments & a couple months of hell where the bleeding just wasn't stopping by itself,(needed Primolut for that) we have now decided that we're willing to try fertility treatment in the form of Clomid.

We have been TTC (trying to conceive) for the past 20 months without success which is why the decision.

These are scary times, but also a new chapter in our lives where hopefully treatment will work & we will be looking forward to a new person in our lives.

I have to say my partner has been fantastic through this entire process & really my Mum & sister also. Basically, if you have a good support network I think you can get through these tough times, through them, not get over it, get on with it, or just shut up about it but cope in a way that suits you, that helps you get up out of bed each day & say "I can do this".