Sudsey's endometriosis site: Blog

wow long time since I've updated here

Fri, 24 Oct 2008 18:53:47 -0500

endometriosis is still very much a part of my life. It no longer controls my life but there are still times it takes me out for a few days. I resorted to Low dose Pain meds to get me through a few rough days. I also seem to have a major issue with ovarian cysts that are rather painful. Recently I noticed I have a mass growing again that's been causing me some minor discomfort. It's right on my incision line on the left side. I hate to suspect it to be another endo mass but I can't help wondering. Like before it has dimpled in the scar as it pulls inward. My doctor didn't want to even put me through more surgery in the past b/c he was so afraid that it might herniate the scar. This obviously left me to feel rather anxious and upset several yrs ago. I just can not allow the past to haunt me. I guess it's time to make a appointment to get it checked out. I have always refused to use lupron and that's not changed. I've been battling with high blood pressure as well so I'm just not too trusting of hormone pills of any kind. I guess time will tell where this leads me to. I know I can not live in pain either.

an update..

Tue, 29 May 2007 14:11:03 -0500

My life has been good and I have enjoyed every moment of every day. Endometriosis will always be part of my life story and even while I have moved away from the nightmare it once put me through there isn't a day or a month gone by I haven't thought about my journey. The further I am away from it all the less painful the memories become for me. I haven't forgotten the countless yrs I spent just making it from one moment to the next or the anger I came to feel or the resentment I grew to have but I somewhere along the way made peace with it all. I can drive myself right back through the hell that was my life in the years I spent suffering from the endometriosis easily but I can also now see the things I gained from it as well. I learned so much about my own strengths my determination and a drive that I wouldn't have known existed had I not gone through it. I met wonderful women who became a source of strength and power when I felt I had none of my own. I learned to appreciate the little things the moments I wasn't in pain a moment I moved past the pain to be there for one of my children or for my husband. I didn't take much for granted. I gain compassion for those with chronic illness as never before. I gained a sense of myself as well. I wasn't this disease anymore then this disease was who I was. It was part of my life my story my journey but it wasn't the main focus. I had so much to be thankful for outside of the endometriosis. I had a wonderful loving put up with alot of shit Husband who stuck by me when I wished so many times he's walk away..I had 5 beautiful handsom son's to make the worst of it just that much better for being there and caring about me. I had so much to offer and Endo wasn't able to take that away from me it could ravage my body plaque me with pain and turn my emotions on the head of a dime but still under it was me.. the me that remembered what it meant to be alive to have hope to want to overcome. The women I would come to spend many hours talking to about this disease and the effects it had on me and my entire family were like no others I'd ever met. We might not have had identical stories or the sae degree of pain or even the same degree of endometriosis but we had a drive within to change the face of this disease to reach out to those suffering to defy the odds and to overcome it. Most of us encountered the uneducated doctors who well needed a few lessons from us, we knew what it was like to have this misunderstood disease take from us the things we cherished most in this world. We know the fight to be had to get that back. Many times the forums are heated debates when someone isn't aware of an aspect or has misinfo on a topic. We had to be brave enough to sit through the heated moments b/c what was under then and between them was unmatched anywhere else in our lives. Who better to understand then our fellow Endometriosis sisters. Who better to offer their story and hope then those going through it with us. We might come to not get along or have emotions boil over or encounter a very angry endo sis who just needs a place to vent and let it all out but there's more much more behind the outter shells of the pages of any forum there are life long friendships forming and supportive communications that go on through email only made possible by our encoutners in these forums. We learn tolerance for those who don't want help patience for those who boil over and acceptance by the friendships formed there. From the outside looking in many would like to paint our stories as us sitting around complaining about our pain and fighting like cats and dogs and worse but they have to be on the inside to see what is truely beneith it. Some spare a spouse even children the hell of how they feel and use the forum as a safe haven to let it out and le it go so they can begin to heal. Some need extra attention for that which isn't in their present life with family and friends who can't begin to understand their story their pain their utter fears of living with endometriosis. It's mor well rounded then anyone on the outside looking in would believe. We cry when a new member joins to think their journey has only begun, we want to help educate them keep them from the mistakes we made teach them other means to help them cope and not all come in willing or even ready to accept the helping hand they can't move past the shock and the devistation yet.. We see them arrive younger and younger as it breaks our hearts that we must find a stop and end to it a CURE.. We fight today in hopes our children and their children wont know this disease only to turn around and see another sobbing mother explain her daughter just got the diagnosis. It's not easy to watch it's not fun and pleasant and all cheerful it's all painful for each of us in it's own way and not all of us deal or cope with it alike and that's often where we but heads. We walk into life being told to trust a doctor but they don't have all the answers and worse are those who can't openly admit this to their patients, some go on to utterly refuse to be their doctor for having the right to say no to a treatment. Jobs do not understand a women taking off b/c her period is so bad that she can hardly stand up let alone come to work or worse she needs too much time off for surgery. Many go to work in missory and sit trying to do their best b/c it's not a choice they have a fmaily to support and can't take off when they need to. Disability for this disease is terribly hard to recieve. Some Doctors think pain meds are a solution and for some it gets them through the roughest spells others come to find a med doesn't work b/c their body got too used to it and for such they are labeled a drug seeker. I took a natural path and learned about estrogen and how we ingest it and most women are estrogen dominant and it's what feeds the endo and yet never were my hormones tested by my doctors. I took it into my own hands b/c the alternative would have been to be scooped out like the pumpkins at Halloween. I didn't believe it would even work I walked into it thinking I'd try anything once.. This promised to helped in the long term where as doc methods were short term drugs poisoning my system or taking my organs out neither of which I could mentaly prepare myself to go through. Others had only to find out the quick fix wasn't a fix at all but a trade off some got temporary relief but I wanted more we all wanted more. I was furtheest from the health nut in fact I was anything but. So taking myself to a place so unfamiliar to me and so on the edge of even acceptance by society was hard to do. What could it hurt or make worse then things were. I couldn't begin to put into worlds the night and day I went through in the first weeks of it. I thought it was in my head that it was working and wondered when it would stop working or reality would set back in but here I am still doing real well. I haven't gone promoting this other then my two web pages but if people want to know about it and try it for themselves it's up to them I wont promise it will work I can't I know it did for me and I wish it did for everyone but I also know in my research many who tried this did one step not all steps. you have to change your diet and Take the vitamins and be faithful with the natural progesterone cream skipping one can mean the difference of success and not. Over the first yr I played with myself to see the difference out of pure curiosity and yes at times stupidity. I'd forget and pay for it. I'm not free of it all by any means I still have a few not so good days a month but compared to 2 weeks of being the worlds biggest bitch to maybe 1-2 days of it was worth it, and bleeding O Gosh bleedin so heavy I couldn't leave home and for 2 full weeks a month I lost all quality of life b/c with that also came the pain. I now have a cycle of 30 days and bleed max 5 days and it'sno where near the heavy bleeding it had been. Leaks now are only a slip or night time thing when the blood pools in the uterus. The clotting while I have some it's the soft ball size clots I once had either. Some months it plays goofy on me still I'll start a little early or late but nothing so unusualy I'm panic struck over it just annoyed. It's taken me a long time to move past what I came to expect with periods and that I could plan my life without considering a period messing up my plans again. I have more engery, I'm happier, I can do anything I set my mind to without fear again. I did also come to learn respect in forums and in life itself. It takes a few things to handle the forums Respect, Tolerance Acceptance, tact and thick skin, but despite the tiffs the ugly posters if you can look past it to those who can and will become your best friends in the world it's worth wading through the shit storms to find them and believe in your purpose on them. One of my best Friends Loretta and I met on a forum for endo both seeking the same thing having the same goals and ambitions when it came to living with Endometriosis so it made all the uproars on the forum and all the ugly posts worth it's weight in gold to have met her.. Had I taken and walked away b/c some shit head made it a bad day on there I'd never have met this beautiful soul who's been an inspiration a friend and awesome endo sis to me. I met Amanda on that forum to and she's just a delightful spark in my life that talked me through alot of tough days made me laugh made me cry and made life a little more tolerable having endometriosis. there is always a stink pot on every forum no matter the topic and they win when we give in and leave b/c they take from us the support we are seeking, that one friend who might help us cope make us feel a little better just by being able to understand we aren't alone with Endo. We win when we tell them shove it I belong here too and I'm not letting your bitterness run me off. Often in the yrs I watched the many forums I belonged to turn to shit in an instant I also got to see how ignoring these idiots in a collective mannor took the forums back from their little stinker ways. No one posting no one responding they got bored with themselves and eventualy left. they like the attention given even when it's negative the spot light is still on them.. It's not easy to ignore them but knowing it get their goats makes it fun to when the end result is their exit. They demand our attention our energy and feed on it I pity them..

My story the road to getting better

Tue, 29 May 2007 13:15:11 -0500

My story on video

Tue, 29 May 2007 13:10:55 -0500

freaky experience

Tue, 20 Mar 2007 21:43:48 -0500

One evening I notices a sharp shooting pain in my breast. Ouch painful like a needle was poked into me. The next morning when I woke the pain had increased 10 fold. I couldn't move without pain in my breast. Terrified as any women would be about such a pain I tried to look up causes of this. Breast cancer can help but flood the mind of a person in this type of pain. Two days of utter missory I had used ice packs on my breast to numb the pain. temporary relief at best. I began to feel ill all over my body. Something wrong with me and I was going to give it at best another day before I called my doctor. I had switched from the ice packs to a heating pad. All the sudden it began to seep a green fluid. That in and of itself terrified me more. My God I cried is it gang green or something... Apparently I had a mammary duct that was infected and blocked. Draining began the road to relief.. All that pain from that infection in there... I put an antibiotic cream on myself in the hope it would heal.. I never in my life knew about such a thing but reading up on it online it's not as uncommon as I thought. Mammary duct ectasia Mammary duct ectasia occurs when a milk duct beneath the nipple becomes dilated and filled with fluid. The milk duct can then become blocked or clogged with a thick, sticky substance. I was well aware that if it didn't self resolve I was in need of a doc visit but last resort as I hate going to the doctor and will do about anything to avoid it.. On a mammogram that infection can be misstaken for Cancer and prompt a biopsy which I'm more then thankful I didn't have to go through b/c I'd have been a total mess at the thought of it even if the end result would be a infection I'd have worried myself to death.. Lucky certainly that it drained and healed on it's own.. It was frightening to see a green thick fluid comming out of my nipple. The pain If elt was horrific. Clothes touching me forced me to wear a sports bra 24/7 but as any women knows yo brush up against things or arms brush against you in ways you are most aware of when it caused horrific seering pains. I felt as if I had dodged a bullet in a major way over this knowing it could have gotten worse or not drained and required a surgery to drain it. I feel 100% better now and next time if and God forbid I hope not there is another experience such as this I wont hesitate going to the doctor or ASAP.. Ironic thing is as I explained this to a close friend I made mention it reminded me of breast feeding pain with engorged breasts and I suppose infection in that very milk duct was why I could relate to what it felt like..

update

Tue, 06 Mar 2007 10:44:02 -0600

Ok Periods have bad habits of comming at the worst times. I suppose part of me never gets past the feeling of needing to avoid certain things like appointments when I've started. the hauting memories of the times it became such a frightening ordeal to be in public with phantom bleeding so heavy I bled through clothes and was on edge about where I was in the event of. While I'm still unable to shake the fear of the public leak issues even if now things are so much better it's a scar I suppose on my mind. I continue to have a few rough days nothing to even complain about but enough to make me uneasy from the old scars of what used to be. I have recently added to the mix of vitamins Flax seed pills. this is the first visit of my period since I began with the flax seed oil pills so I can't comment just yet on the effects of it on my cycle. As with all else it takes time to notice if things are changed for it or not. I have also taken to a multi vitamin nightly. I continue to battle with fatigue that isn't as debilitating as it once was but it's still not 100% better. Another rather strang symptom I often get the days prior to my period are headaches. A dull achey headache. I'm not sure what brings that on if it's some shift in the hormones or what... For Christmas I got myself a Dr scholls back massager that I highly recommend O my goodness it's so soothing for the minor cramping on days 1- 2.. It has built in heat as well so that's been awesome.. I am truely pleased with this product. I can report that my PMDD has gotten much better. I didn't have it this month at all. I was so happy not to deal with the moody feelings. I also think it's helpful to recognize when you do feel a wave of emotional hellishness overcome you. Recognition in the past helped me avert it. I told myself the way I felt wasn't real it was PMDD and I refused to accept the emotion be it anger or resentment or frustration... I have worked hard on recognition and hitting an imagined eject button to the emotion in my mind. Posative thinking with the knowledge like attracts like have been a tool I have been working with. Life is often hard and can toss us come disturbing curve balls but making myself aware I'm in control of my behavior and reactions to the emotions envoked... when I joined the Endo forum and someone spoke of making peace with endometriosis I thought they were totaly nuts. How can you not be angry at the affects of this disease?? I'm there now!!! I'm in control Endo not you and I choose not to give you the power over my emotions and my love of life. It's not that simple but it's a start. I lived for long enough to put it on center stage in my life and I did so by choice. I choose not to now. I took back my life from this disease... I told it I'm in control I make the rules.. I'm grateful for all that endo has taught me in my life for the compassion I learned to the tolerance to pain and emotional hell to learning that I could feel weak and be stronger for it. I owe alot to Endo's lessons in my life. I appreciate life more for having survived it for dancing to it's tune for far too long.. My heart goes out to those still in it's powerful grips. I'm by far not cured from it but I'm in a place I can cope with it. The purpose of not all getting here is to force those in the position to find a cure to not dismiss us b/c some of us got relief. There isn't a day that goes by that I haven't felt the pangs of the past that are so close to my heart for those still in that position. I wish I had the power to wave a magic wand and help all of my endo sister out of the darkness of this disease, and have a cure now.. If you think making peace with endo is crazy you are 100% correct I was there at one time too and it's just saying you aren't ready to make peace with the endo not that it's impossible, and you aren't wrong to be angry with it. It's a process we need to get to the appreciation. I'm not some pillar of strength b/c I have made peace with my disease it was a long hard fight to get where I am today a 1o yr battle with hopelessness and feeling the lowest of lows. My site began when the pain was overwhelming me and I had come to the end of my own rope of tolerance with endo. I had no quality of life left and I wanted to die rather then spend another day fighting... I can't claim that this miracle in my life makes me better then my endo sisters or wiser or stronger and my blog was formed not to snub anyone still living with the pain and agony of endo but to give those who were where I was not so long ago hope that there is a better tomorrow that there is understanding out there. I have had to ensure the pain of these so called experts who say vitamins are of no benefit when they saved my life. I wrestled with the na sayers who say how dangerous it is to take it on yourself and take vitamins that some GOP didn't approve by their standards and b/c I didn't listen I'm better and have a quality of life and you want to take that away from me with your laws? To regulate the vitamins my quality of life depends on. Do your homework here make your own mind up b/c it's still your choice for now but how much longer I'm not sure. The risks for me outweighted the possibility of wanting to take my own life. Real or imagined I felt unable to live when I had no quality of life and my life affected those I loved most in this world. I was more then aware the food I had consumed no longer met my nutritional needs b/c of the chemical qlterations and the scientific mucking of God's work. The need for bulk and mass production has changed the foods that once wouldn't have harmed us but now do. Cooking changes foods and depletes it's nutritional values as well something my Grandma told me in my childhood. If they actively went about testing our values we might have a clue as to how much but studies conducted fall far short of those measures and are based on long term studies that look more at disease then the body chemistry which in MHO are bullshit. I wont get on my soap box on all the manipulation to keep us unhealthy but know this I have done my own homework and am living proof of my own research and conclusions drawn. In endo pain I would have cut off my own arm if it was a prooven cure for this disease. Those doing Endo research have written that vitamin E benefits our bodies with pain reduction... C is known to booste our weakened immaune systems and my own mother has believed in multi vitamins for yrs an avoided bone loss b/c of her belief in calcium vitamins. All gastro will openly admit that our diets lack proper fiber consumption. A sad reality that not only comes from a society on the constant go lacking this invisible thing called time ( by the way I believe that's a human made condition of illusion) But for which our health has paid the price over. Our bodys are talking it's up to us to listen to their needs. Not what others claim they are saying but what we know they are saying. I didn't need a confirmation from a doctor to know the pain I felt from endo was real. I didn't need a boat load of tests to know that the symptoms I've suffered from had in part been due to endo and part to lacking nutrition. My immune system now is working once again and I'm able to avoid most colds bugs that I once was 100% certain to get and get 10 fold worse then the general public. My own immune system was attacking itself. A yr on vitamin E and ester c boosted my immune system back to optimal function where it was able to avoid even getting sick spoke louder then the bogus research it was harmful to my body... When natural progesterone cream took a two week period down to a 3-4 day period without the phantom bleeding I got my proof that Estrogen dominance was my problem and why the birth control with estrogen made it 10 fold worse on my system. I had too much as it was and adding even a touch more with low estrogen birth control was devistating to my system... Had my doctor checked my levels he'd have known this but it's not the basis of the medical practice of magic to test then treat but treat then maybe if lucky test. Which is why so many suffer. It's a one size fits all practice that's causing more harm then helping. Antibiotic controversy is one major example it once was a cand for all that ailed a person and the ugly truth was they didn't all need it and for the neglegence of which they created antibiotic resistance and we trusted them !Antibiotics while beneficial to some ailments kill not only the bad but also the good and lower the immune system function even further. where is the sense it that??? The attack on the vitamins is the public awareness in that they do work and those in power want to profit from that and control it.. It's ok for them to treat first and test later but not ok for the vitamin arena? As they say follow the money.. Control does and hence their dire need to make us confused in the truth that vitamins work.. Folic acid prior to becomming pregnant isn't questioned but it too falls into the citmain feild they want to control. If the human diet was a ok then why would we need to add anything??? Proof in the pudding...They contradict themselves and that speaks if you listen... It's your choice to make and you know opinions are like assholes everyone has them and they all stink make up your own mind do your own homework and weigh the risks for yourself. What's worked for me might not work for you but unless you do your homework and draw your own conclusions you'll never know... Be bold be brave make up your own mind based on your own trial and errors not the opinions of others...

Updating...

Thu, 11 Jan 2007 08:38:38 -0600

I am working to update my links page. This is not an easy task. I came into so many helpful web pages along the way and dilligently bookmarked the sites to revisit them time and time again or to have them for refrence to help others whom like myself wanted and needed answers. I'll have to also dig through my archieved emails for those links as well as I often sent others emails with them. While at this point in time I've stepped back from the countless hours I once spent to uncover new and exciting information break throughs or just info for personal understanding on endometriosis I do infrequently check back to the research site to see what new things have surfaced. I hope that by providing these links those inflicted will have a head start on their own journey to better understand their disease. I know I often felt frustrated and just lost trying to find web pages that were not some repeat lame description of information I didn't just already know but was experiencing. I wanted to know more always as I fought to get better. Knowledge was power in my book and often knowledge was my weapon against the fear. At first diagnosis as I've explained in my blogs I researched thinking immediately I was infertile as it was the biggest eye popper on all web pages I ran across. Little did I or my husband know God had other plans then infertility for us. With 4 beautiful son prior to my diagnosis I would add one more son to the family before surgery confirmed the diagnosis all the while I was more then 100% certain I had to be infertil b/c 100 plus web sites made that a main focus with endo. Truth is it's not and many women with this disease do have children despite those odds stacked against us. In my Early years I misscarried my first pregnancy while I will never know the cause I did come to suspect having Cervical dysplasia that was precancerous on my cervix as a possible cause in it. I also didn't know at the time that might have been caused by the HPV virus. I'm unsure as that Gyn went out of practice some yrs prior to my questioning that aspect or getting my records. I do however hope the links are helpful to those who like myself want answers want hope want to understand they have to advocate for themselves with doctors. I could bitterly go on about doctors who I felt at odds with over this disease and it's vial bandaid treatment but I wont I will only say this for now you HAVE TO ADVOCATE for yourself with the medical profession and NEVER let a doctor force you into a proceedure your gut is screaming hestiation on. I listened to my inner voice that time and time again said No to Lupron, no to Hysterectomy, No to having my ovaries removed, and no to doctors that did not have my best interest at heart. I often was the difficult patient but no mind I saw them in the same light the difficult doctor. I refused to allow them to make choices I knew belonged to me and would affect only me in the end. theyw ouldn't have to deal with side effects of any of it and I often quesioned a male doctors true perception of menstraul pain. I was conflicted as I fought wildly with my doctors listen to me PLEASE. I have rights it's my body my disease and I don't care how many surgeries you have done or how many endo ladies you have seen my case is unique as is each patient you see and if you can't respect that in the medical feild then I'm going to fight to make sure you do.. I often joked with my mom over the years how I knew I was the topic at the dinner table of some doctors. O well if my crime was having knowledge all docs were guilty as I was I just didn't need a degree to back it up, I was living with the disease and had knowledge one thing the majority of doctors wont be able to claim. Until male docs grow ovaries and suffer endo they can only read about it and in my opinion I could read on surgery but until I proform surgery I can't call my self a surgeon and the same held true for my battle with endo and medical world. It's one thing to hand out ddrugs and listen to our complaints it's an entirely different thing to live with this disease to live through the S/E of the meds and surgeries one thing my own doc would never have to worry about so it might have been easier to dismiss some of my stances for that. Just as I can't comprehend owning a penis they can't fully comprehend Endo until they walk a mile in our shoes.

January 2007

Wed, 10 Jan 2007 15:59:53 -0600

For Christmas I got myself a Dr Scholl's massager. What a blessing it's turning out to be. A soothing message to help on my rough days.� I only call them rough b/c yes I still experience max 2 days a month that I liken to what the normal women would experience with a monthly spell. Mild cramping in my lower back is mostly a nagging discomfort that I deal with. I'm never sure if my adhesions have come into play or not with it. In the month of being on progesterone cream I had a few months I experimented with it. One month I tried to see if I could take the progesterone cream until my period actually began or if it would act like the pill and ward it off all together. What I came to learn is I felt more agitated more uneasy and that it wasn't working for me. I have found that for me I need to take it up until the week before I am to start. I have less PMS symptoms this way. I also found that if I take Diurex pills At the start of my cycle that I feel better the cramping is reduced and my moods are better. I take the recommended dose on the box at max 3 days or less depending how I feel. Usually on day 2 of my cycle I have a heavy feeling. At times I would describe it as feeling like I had a bowling ball about to drop from my nether region.� Those two days of cramping and pressure prompt the lowest dose of Darvocet. I am one who has never welcomes pain medication and in fact I went 10 yrs taking only excedrine for the often excruciating pain. What prompted the pain meds was strictly a hospital stay and a visit to my PCP complaining about the painful cysts I suffer with. I asked her at that time to be sent to a pain management specialist for the endometriosis but she refused. Instead she prescribed me Lowest dose Darvocets which I reluctantly took and found to work for me. I am a mother of 5 very active son's whom keep me busy and pain medication which made me sleepy or fearful to drive when taking them was something I did worry over. On my Bad days I'm unable to take them during the day until after my son's are home from school.

Women who seek the help from medications are 100% more likely to be looked down on and judged. I heard from many women with Endometriosis whom are on pain medications have those in their lives expressing a negative reaction towards them about dependency and addiction. It's a sad reality and I suppose it can happen but that doesn't mean it can or will happen to everyone who needs the aid of pain medication for relief. In the patient and the doctors business unless there is a very obvious addiction. I would strongly recommend that you keep that information personal or within your immediate family. Those whom love and care about us should respect our privacy as well as our choices.

I myself never had opposition from family only concern. My parents concern themselves as well about Pain medications and asked their doctor about their own use becoming addiction. Their doctor told them if you come to need the medication and look to the clock anxious as to when you can take a next dose or take a next dose before the allotted time period then you would worry. If you are taking them as prescribed with the often 4-6 hour allotted time span between doses then you shouldn't form an addiction. Often times people are given a pain medication that doesn't work for them and that's when you� need to consult with your doctor that what you have been given is not working. Sometimes people respond differently. While my husband learned that himself, he was kept wide awake on a pain medication that he truly did not care for and a call to the doctor and a switch made the difference. Of course it was a one time thing he'd never used pain medication before that so he had no prior knowledge how he would react to them.

�Leave friendship footprints on the hearts of strangers who need you....

Sing and Dance like no one is watching

It's been a little over a year...

Thu, 04 Jan 2007 10:50:51 -0600

It's hard to belive that it's been over a yr now that my life with endometriosis has improoved. I was reminded this Christmas how much anticipation fear apprehension and worry I still had only a yr ago but had learned that there was hope for a new beginning a reality that the life I once adored and loved would come back. a year ago I found out that the natural path was one that worked for me despite all that apprehension about it all. I was for the first time in 10 yrs having pain free times without the massive PMDD symptoms and heavy bleeding was reduced. It began a new chapter in my life though I openly had my fears of how long it might work and if there was any chance that one day it would be less affective how I could taste the life I'd longed for and only held in memory those 10 yrs how I've cope if suddenly it stopped working for me. Inside I knew I needed to take full advantage of each and every day I was alive and well and capable of having a quality of life back. It's been a little over a year and I'm happy to say that apprehension is gone. I no longer waste a moment of my precious time pondering on what if but pondering all the things I'm setting out to accomplish enjoy and embrace every moment that much more. what I've learned is that you must be strict with natural Progesterone cream, vitamine E and Ester c, that I'm not cured but living pain free. I've made peace with this disease. I've thanked it for the lessons it brought into my life. I learned such compasion for those with chronic pain. I learned limitations, learned new ways of doing things I often found myself unable to do, then had to learn to do them again as I got better. I learned that I never wanted anyone to pity me or feel sorry for me b/c I had endometriosis. I did often wish for more compasion though not pity. I wished that I had been treated differently by the medical community as well. I wanted people to understand the sides that often reared their ugly head weren't the real me but the disease and how it often tormented my thoughts and robbed me of abilities others just deemed me lazy for my inability to handle anymore. Many years I curled into a ball of pain cursing endo for destroying me and my life I blammed it for not being happy not feeling like myself anymore. I blamed it for loosing good friends and making me more angry. I felt at war with something I couldn't see unless a doctor cut me open and removed it. I was fighting to get a grasp on it's symptoms both emotional and physical. The day I made peace with it I could see the world around me much clearer appreciate those brave souls in my life who stuck by my side on the worst days who listening to my cry who heard me complain. I made peace for the inner strength I had gain through it all. I made peace with the medical community's lack of compasion and lack of knowledge about this disease. Endo became alot of things in my life. It turned me into someone I never wanted to become and yet it gave back in ways I had failed to recognize. Perhaps it was my cross to bear so that I may know the depths of my own compasion the inner strength my tolerance to pain and even at times my own limitations. Would I go back and wish for the life it took from me no b/c in the end I knew clearly all it had given to me. Many women with this disease have not been so lucky as I have have been and my heart is still with them in their battles in their fights with Ednometriosis. I can only hope that my story brings hope to those suffering brings compasion to those family members of the Endo ladies whom fight to help those who love them understand it's not in our heads the pain is real the feelings despite how irrational at times they may be are very real to us. We want more we want to have quality of life to be mother tending to the needs of our families. We want to hold down jobs and be top notch at them. We aren't A Bitter bunch of complainers who just can't hack the cramps of a mestrual cycle and we are just spitting out words of hate b/c you pissed us off at a bad moment but those are our battle cries for help recognition understanding and a release from the hold a very missunderstood disease has on not only our bodies but the whole essence of our being. My marriage could have been lost to endometriosis many times over. I was never proud in the moments I let the frustration of dealing with it or the emotionaly hellish roller coaster ride speak on my behalf. I was no more in control of that aspect of self then anyone is in control of what their neighbor does. I never failed to appologize to my parents and my husband when my emotions made me come unglued bitter resentful and mean. Yet it was my broken record that over time I knew was not as easily forgiven. I learned the true bond of love friendship from those who stood by my side those 10 yrs as I suffered. Thanks will never be enough and a million I'm sorry's wont cut it. I wasn't sure what became worse that I feared the natural treatments failing me or that family and friends were leery that the I was a new me the old me they could lovingly remember. It took adjusting to the changes they could see in me. Patience from me that it would take them time to accept the changes in me. In time I had shown beyond a shadow of doubt the me prior to Endo was back. I was happy I was better. I never fault those in my life who tok the graceful exits or those who lacked understanding because without walking a mile in m shoes they couldn't have begun to comprehend it nor did I truely wish them to have that comprehension of endmetriosis. I learned to better communicate with those close to me it hurts here and this is how it feel and I'm not in a good mood because of this pain and let them know I needed space for a while. It hurts was vague, something I never did comprehend. For the past yr I have enjoyed my family challenging myself, excersising again. I have a new lease on life. I have a deeper appreciation for my life. I am blessed for those endo sister I met along the way whom were there for me. I look forward to writting a 2 and 3 yr update. Never give up the fight and the hope that tomorrow will be a better day. <3 Sudsey

Rough November

Sun, 12 Nov 2006 19:13:03 -0600

Well this month put me on edge. I got to see the effects of stress on my cycle as I was a week late and worried as to the cause. Approaching this one yr anniversary I was a touch afraid of going backward and being late brought me back to those times for sure. Knowing there's not even an probablitiy of pregnancy I thought cyst or stress was behind it. I had a truely rough 1st day that also heightened my fears a bit. I had to resort to the narcotics I truely am not found of taking but the pain was more then tolerable and warranting them. I truely hate how the wars of dependance and abuse over narcotics with endometriosis begin. I went through 10 yrs taking nothing and living in some of the most horrific pain known to man on a monthly basis for 2 weeks of every month. I never gave narcotics much thought other then those times I had other surgeries and needed them but I more likely resorted to hoarding them for periods which I often felt were much worse then pain after surgery was. At the end of my rope last yr I had gone to my PCP for help and she prescribed the lowest dose of Darvocets to me a bottle of 30 pills. It would take me months per bottle and I was not at all taking them unless the pain was to the point I wasn't functioning which usualy was 1- 2 days a month. I never would have consider that as addiction and still do not. I've spent a yr with them for the bad days and they are as effective as they were that first month last October. My PcP has not yet refused the pharmacy to refill them for me, to which I've been grateful about. I honestly at this point couldn't manage without them those first few days b/c I am to the point I've lived a yr without that pain that was lasting for 2 full weeks of my life. I did my time being the hero who went 10 yrs without pain management. I don't know if I was stupid for it or not but I'm sure back then I'd have certainly won the label as a junkie for the length of time I would have needed them compared to now. Even now I am truely cautious of taking them only as needed. My parents who worry most of all about addiction to pain pills asked their doctor and he said if you are addicted you'll know b/c you watch the clock asking and anticipating when you can take the next dose or take them for the high feeling and not the pain relief aspect. I suppose that made me relax b/c I didn't do either. There are times it takes a bit to get kicking in my system and I'm wondering if they are not working but it's just angst to get the pain to quit sooner then it's taking. the few days I do still have a generous amount of pain only serve to remind me I'm not cured from Endometriosis but I do have the upper hand on my disease. I wish I was free of it all together more then anything but I keep a hope within me alive that one day there will be a cure. I will be faithful to natural progesterone cream, vitamin E and Ester c and avidly avoid the foods that have more estrogen in them. I don't miss the foods I can no longer eat and in fact they were worth giving up for how my life is now. Many of my endo sisters were in daily constant pain and the narcotics were all that got them through the day but it didn't mean they had addictions to them. Until a person lives in the chronic pain of a disease it's truely hard to understand those who are there and have lost the quality of life they had b/c of the pain that is so out of control and no one can help stop that pain. Surgery to many meant adhesions and those as I have them are monsters for pain. It's organ binding and tugging and pulling on organs that should be free floating within the pelvic cavity that now have bands of tissue restricting them and creating pain. They are working on ahesion prevention methods but they aren't there fully yet. This means that despite the medical communities best efforts to remove the adhesions and free theorgans they will come back and often times with a nasty vengence. It's a truely sad situation to remove a disease that is painful and find it's a trade off for painful adhesions. My adhesion experience has been painful as well and I'm well aware of them when I've stretched the wrong way close to my cycles start or get up to quickly and it feels like a rubber band snapped inside of me with a burning stinging sensation to follow. It's sharp seering pain I will never forget. It was questioned for a long time as to why women with endo had such terrible pains but it was being learned they have their own nerve endings forming and the knowledge is often slow to descend upon veterain doctors who might have their minds made up on this disease b/c patients didn't stay with them or challege them to learn more.