who would want a big ol' mess?

[cherry]

When I was diagnosed with endo I was in bits cos I had horror stories in my head not hard facts. My boyfriend was fantastic and did so much research he told me stuff I didn't know when I get to his house, and he assured me so faithfully that we would do whatever was needed to have children.
It was nice that he didn't run a mile but to have him make promises like that when he was only 20 was sickening to be honest.
I feel like my insides are dirtied, with bleeding 'sores' filling my abdomen every month with blood and crap, and they are only gonna get worse. You hear women’s insides referred to as 'a mess' like someone went in and trashed the place. But it's a woman's body, her vital organs stuck together with these revolting cobwebby adhesions, like all that gum you were warned not to swallow. Then there's the scarring from all the laps, excisions and cauterisations.
I'm not sitting here feeling sorry for myself, just expressing the embarrassment of this disease. It makes me feel sick when I think about it.
Nobody wants to be 'a special consideration' when planning to start a family, or be the one who the finger is pointed at, the one who is pitied when you don't get pregnant or don't get past the first trimester.
I wonder what I'd do if I don't stay with my boyfriend. He knows about it, has accepted it. But I wonder if he wonders what it'd be like not to worry whether we can afford IVF only a few years into our careers.
I felt sick that I had to tell my friend I had endo when we got back in touch, and she told me she was pregnant. Cos she was so embarrassed and guilty and I was only so happy for her, cos I'm relatively ok, still a potential baby machine last time we looked.
If it is him, or if it's not him, I pity the man I marry. Endo seems to be waiting game.
Wait and see if the treatment works, wait and see if you stop bleeding after 4 weeks cos your hormones are such a mess.
Wait in the emergency room for someone to assess you and give you the painkillers you desperately wish you didn't need, wait to see if they look at you like you're exaggerating.
Wait and see if you're better off without meds, wait and see what foods trigger the pain and what painkillers even work.
Wait to see the doctor, wait for your lap, wait for your labs, wait for your hysterectomy.
Why would you want to drag someone into that with you? You just end up feeling guilty for being in love cos the poor sap gets to experience all of that with you, see you crying, puking, dizzy, pale, spotty, moody, curled in a ball, wince when they touch you softly, see your tummy swell cruelly almost like pregnancy but actually it's just full of blood, gas and retained water.
I hate endo, and that's why I'm so angry when doctors don't seem to take on board, when they don't stop a second and step into the world you are describing to them in intimate detail, when they wave you off with 'it could be worse, take these and hopefully you'll be so off your head you won't be so miserable when things fall apart'. Then you are so grateful for a doctor who listens when that’s all you should expect, all you ever needed.
It's a consideration in everything I do, too intimate to explain to people but too painful, physically and mentally, to ignore.
I'm angry for all of us xx

[camille]

I am sitting here at work trying to hide the fact that I am crying. This is exactly what I have been feeling the last month and especially the last three days after learning that only 4 1/2 months after my lap, cysts are back. And I am waiting for my insurance approval so I can find a new gyne so he/she can tell me what is really going on in me and right this minute I am feeling the rumblings of day 28 so I am waiting for the lower back pain and the leg pain, and the nausea - I am waiting for it to get bad enough to tell my boss I am going home.

I am trying a slightly modified diet too - endo-ish plus my acupuncturist's recommendation of "yang" foods. So I am waiting to see how my body responds to that too.

And all this time, as I try to live one day at a time, there is that constant question in the back of my mind, will there ever be any babies? And that is the ultimate wait. Waiting to see if all this pain and mess even produces anything.

Before I was diagnosed. before I had my lap done, my Primary care doctor was describing to me how the repro organs work, what hormones levels do and why, and she drew a picture of it all on the exam paper. Pointing with her pen she said "this is pure poetry in here".

And I have to remember that not all poetry rhymes, and most good poetry isn't created from leisure and ease.

Thank you for this post Cherry, it's good to know someone understands.

[ouchy]

Holy crap! You guys brought me to tears! That doesn't usually happen! I dont' even really know what to type! You guys should compile your stories in to some "Endo Memoirs" book and sell it! Your stories are so much more realistic than that one we had copied/pasted on here of that one endo story that seems to make its rounds in the endo world. These are the best descriptions of pain and emotion, thoughts of the future, and fears of the present that I have read so far!

I love you guys!

[JackMcFarland]

You have, in a short post, summed up everything that I've been feeling the past few weeks. My life was going amazingly, but recently it's been turned totally upside down.

My last lap was two years ago, I've been on continuous BC for nearly 4 years, the doses progressively get higher and higher. I came off the pill because I was getting horrible nausea, and the spider viens on my legs were just...horrid. I had been getting bruises and my Dr worried abotu blood clots, so I came off. Three months later I'm in an even worse position.

I went in to my regular OB with what I thought was a UTI, my urine came back negative for one. Dr said if a urine test came back negative than a culture would come back negative as well. He gave me a three day prescription, but said most likely it won't clear up because he thinks it's my Endo. I got back to work and broke down. My boyfriend came up to try and calm me down (ironically, he thought I was pregnant and having a breakdown!). Regardless, he was there, talking about treatment options with me. He is so supportive, and the first thing out of his mouth was, "let's try and get pregnant", but I'm 22, he's 31...for us, at the moment, it would not work.

He's my rock right now. He tells me what I need to hear, but sometimes I wonder how much he worries. He says if he was me he would have a hysterectomy, get it done with now....we can adopt, but he knows how important it is for me to have kids. I have never in my life wanted kids so bad than I do right now at this very moment...

But you are right. Endo is a waiting game...I've learned patience with this disease, and how to be humble.

[angelas]

wow. As sad as it seems to be so happy to read such despaire, I can only say that I am so happy that you all have pulled the words right out of my mouth. Everysingle one of us has to play this waiting game. I am also playing the waiting game with my boyfriend since he has had injury which may have caused infertility. He is going through is own worry and aggrivations with pain, and I feel so guilty talking about mine, but I have to say that I would be way beyond lonely if I didn't have this forum to let it out on.
One of my best friends told me today that it didn't seem fair that I was always waiting for something or another, and I fear that when I get really old I will look back on my life and regret the fact that I waited my whole life for everything!
Patience is something I have been learning being in this relationship and living with this disease but it sure doesn't feel good.
All I want is to feel good.

[erzulie]

cherry said:

I feel like my insides are dirtied, with bleeding 'sores' filling my abdomen every month with blood and crap, and they are only gonna get worse.

That's EXACTLY how I felt around the time I was diagnosed! I went to a nurse practitioner in the gynecology department to talk about my pain and I hoped that she would not blow me off like the doctors I had seen before. I had suspected for years that I had endometriosis, and yet when she looked me in the eyes and said, "I think you probably have endometriosis," it was like my world fell apart. I went home and looked at the pamphlet she gave me with diagrams of reproductive systems with endometriosis, and pictured those blobs on my own internal organs. I couldn't sleep for days because I kept thinking about what a wreck my guts were, and I was really upset about it. I kept wondering how I had gotten like that, how I came to be "broken." I felt like a burden to my family because of the foods I didn't want to eat and all that. I remember reading a book which was comparing the immune systems of women with endometriosis to the immune systems of "healthy women." I was really put off by that because I've always thought of myself as a healthy person, and just like that I was being put into a class of "unhealthy" women.
Now that it's been more than a year, I am dealing much better with the situation but I still get embarrassed about explaining to people, and I feel very upset when I have to take off work. I feel better about it now that I've heard so many stories from other people, but I still hate it. I used to feel downright awful about it because I felt like having cramps is no excuse to call in sick. I felt like everybody else could just go on even with cramps so I didn't know why I couldn't handle it.
I don't think you should feel guilty about being in love though! I wouldn't, I mean marriage is for better or worse and you never know what horrible disease either of you could get at any time. If you commit yourself to someone you are making a decision that you will be there for that person no matter what happens, and you (hopefully) wouldn't make that decision unless the person was 100% worth it! If your boyfriend is sticking with you then the joy you bring him must far outweigh any problems caused by your disease! Sometimes I've thought, if I were with someone and she had endometriosis instead of me, how would i deal with it? I think that I would do everything I could to take care of her and to find somehting that would help her. I'd probably visit a forum like this just to find stuff out so i could help her. I don't think I'd feel burdened, I would just feel even more purposeful. The bad part would be seeing her suffer, but that wouldn't make me sorry for myself. I would feel the same way if she had any other illness. I hope I can find someone who will treat me the same way. I think that if I find someone who is really understanding, I won't need to feel guilty about naything because I will know she's strong enough to handle it.

[ouchy]

When I was dating my husband, we lived in separate states (school reasons). The second time I went to visit him, I had my period. I was soooo embarrassed. He got to witness basically labor cramps w/ whimpering and all the weird faces of pain that I make when I get the horrid cramps. He was scared for me and kept offering to take me to the hospital. I explained to him that it was "normal" for me and that it happened each time I have a period. He just stayed by my side and let me squeeze his arm/hand whenever the contractions/cramps would come on. He was shocked by the duration of the cramps and the almost inexistent time between them. Then, several hours later, the worst of them were over. We took a nap together. I think that by him seeing me in that condition and helping me get through the cramps, it actually made him love me more.

Oh. And I admit that when endo was only "highly suspected" and thought that the pain I was feeling was from my ovaries being covered in endo (wound up being endo on my bowels and appendix), I had horrid, vivid images of my insides just bleeding and sticking together and just being a mess. I can identify there. I think that by having my lap, it allowed me to see that it wasn't really as bad as the pain made it feel!

*******EDIT: If this description of cramps seems not that painful for some people and pretty tame, I can also say that there were smooth muscle relaxers and Vicodin involved--I was trying to describe the loving side of having a partner who accepts endometriosis and is supportive of the pain we go through each month.

[kb]

Patience, i still havent learnt that, ive come to the conclusion that i have none and its impossible for me to develop any, just not in my genetic makeup.

I want everything fixed, and want it done now. Amazing isnt it, after all this time u would think i would have developed that.

As far as loving partners go, mines all that keeps me going sometimes, he does everything for me, and yet i dont necessarily return that love all the time. Being in constant pain with unbelievable exhaution, my tolerance for anything is shocking, my moods are ridiculous even to me, and yet he still just takes it and continues to care for me. Thats love, for better or worse. I feel guilt that im not always appreciative, and that if he just fell in love with someone else his life would be simpler. But for better or worse, thats what a relationship is.

[angelas]

I feel like that too - that if he was to find someone else life would be so much easier for him. Sometimes I think it would be easier for me too... I could just be alone and deal with it. I usually only think that when I am feeling really down, and guilty for not being able to pull my wieght around the house... today is one of those days...

[JackMcFarland]

Sometimes I wonder if he gets it. He quite obviously does not want children as bad as I do, but he wants them non-the-less. I try to explain to him how scary it is to be 22 years old and trying to preserve my fertility. He tells me the truth though, and he's scared for me...He tells me that he doesn't know if it'll all be ok, but he is going to try and make sure it is. He's honest, and I've come to the conclusion that as long as he's there...I'm OK.

I can't stand the thought of being 27 and not being able to get pregnant right away. It's not fair. Why do I have to choose now? I'm 22...why do I have to sit here and worry about what is going to happen to me 4 or 5 years from now. I should be out getting my life together...starting my career. Instead I'm going to the Dr every week, being told Lupron is my only option, even though I don't want it...Having the Dr look at me, shake his head, and tell me I'm too young for this - as if I already didn't know.

It eats away at my heart and soul, and though this disease will not kill us physically, it's taken a mental toll that I almost cannot bare. I thought with time things would get easier. I thought with time I would get used to the idea, but instead it's getting harder. I find times when I cannot breath because the stress is so overwhelming. I look at a mother and child so longly that I have to wake myself back to reality from my own perfect world in my head. I wonder even though on my ultrasound my ovaries and uterus are ok, what the rest of my body is dealing with and if something slient is taking over.

I had such a idea of what my life would be...but it's going backwards...it's offically out of my control.

[angelas]

I ask the same questions too about whether or not he gets it. I understand tess that you are only 22. I remember when I was 22 I had already been diagnosed for 2 years and I wanted the same things as you. I had a goal of 25 - to be married and have a child. I'll be 29 this year and the fact of how fast time goes scares the crap out of me! My boyfriend is 29 and he's still saying he's in no rush... and I feel like saying 'ya? well I am'!!!!! I've even thought about the fact that if we were ever to break up what I would do - would I start over and wait or just go and do it myself! Most days I try not to think that way, and I try to live like the rest of my friends and let life be. But when they are all getting married and having kids ahead of me, it makes me feel even more that things are unfair.
Don't give up on the hopes that you can still build your career and find the goals you want to find. I'm not trying to get you down at all... but I'm an example that things never work out as planned, so maybe sooner is better than later for you... it is very probable that I've already lost my chances.

[cherry]

I have that same ideal that you had angela, to be settled and thinking about the next steps to start a family when I'm 26 or so. When I wss told what was wrong last year that sorta went up in the air, I was just like 'can I wait that long?' but now, just cos of the little effects that endo has on my life, I am trying to take each day as it comes. I guess that's why I got so angry and posted this thread, cos I'm so busy trying to prepare for the worst, I am making myself panic.
I honestly wonder though, will I have the strength to try and adopt if I don't manage to get pregnant, and if I did split up with my boyfriend, I can't see that someone would want to take on this potential heartache. I don't think I would want them to.
But angela and tess, don't believe the worst of it until it is an absolute certainty. I know it doesn't seem it with all the complaining I do on here, but making the best of things makes all the difference to me most of the time. It takes a lot of teeth gritting and sounding a bit silly in your own head, but except for the odd days (and when PMS takes over!) it can stop me from getting so heartbroken over stuff that hasn't happened yet.
Some days though, the gravity of it comes and hits you smack between the eyes, and sometimes you feel like you owe it to yourself to confront the possibilities. the fact that it may come true is what hurts so much xx

[JackMcFarland]

Exactly. I try to live my life on a day to day basis, with my boyfriend reminding me that we don't know what can happen in 4 years, and that everything happens for a reason. It's difficult to remind myself of that, though.

And while I'm laughing and having a good time, while I'm trying to live my life, there is always that idea - that constant, faint, soft voice in the back of my head saying, "this could be it....", and when I get that idea into my head, I ask my self - what else is there?

[kb]

I think these thoughts go through all our heads.

I was diagnosed young, 17, and was told at the time that ill be best to consider having children no later than 25. What a thing to be told, but i carried on never thought about it, and here i am 26 and sick again. Only its worse, this time im debilitated with it, i cant work, cant function.

Ive been told to have children to get better, stupid thing to be told, and it likely wouldnt work. Heres the problem though, the longer this goes on, potentially the harder it will be for me to fall pregnant. But i am no where near ready. My husband is now saying when im better he wants to have them, doesnt want to be an old parent, and im the opposite, when im better i want to travel, have so many ideas what i still want to do, and kids dont fit in that picture, not yet anyway.

Its a risk for me to wait, but the way i see it, its a risk worth taking, coz i will not start a family until im ready, i wont let the illness fast track a decision like that. Everyone is different, others will no doubt not want to take the risk, which is fair enough.

So much fun endo isnt it, the things we have to decide at such young ages, would be nice to let life take its course wouldnt it and not worry bout these things.

[erzulie]

I think that's very brave of you, kb

I am different from most in that I don't even want to get pregnant, now or ever, so that aspect just isn't part of it for me. Which I'm grateful for, because it's bad enough without worrying about that too!