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View Full Version : Not quite sure this fits, but I'll share anyway


mking624
02-07-2007, 06:31 PM
Most of this will probably be me rambling, so don't feel like you have to read it all.

I have stage 2 endometriosis. Endo is a reproductive disease that occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus. There's no cure for it. It also happens to be one of the leading causes of infertility. The symptoms are no fun at all...I experience severe cramping and many times even pain during "intimate" moments with my husband. All in all, it sucks. DH and I have been trying to conceive a child for nearly 6 years. We knew about my endo, but also knew it was stage one, so I might not have as much difficulty conceiving as someone in stage four, for example (stage four is the worst). But obviously, I did. In November 2005, I had laparoscopic surgery to laser away the endo. During post-op, my doctor told me that endo was found in my tubes, not a good sign for trying to get pregnant. My stage one had progressed to stage two. I had about a year from that point until I was right back where I was...since endo has no cure, the removal of it during surgery is only a temporary fix. We were told to make the best of that year. It's been more than a year, still no pregnancy. So on top of the physical and emotional pain of endometriosis, there is also the pain of infertility.

I can't even begin to tell you the "well intentioned" comments I hear on a near daily basis, especially as people my age (I'll be 26 in two days) and younger at the seminary we're at are having children. I've heard it all...from "all you need is a vacation" to "you must be spiritually immature" when it comes to my inability to have a child. It pains me so much, and it makes me feel like my body is broken because not only do I have a disease...but I have a disease that prevents me from having a child. Now I know there are cases of women with endo conceiving...and for all I know, that will one day happen for me. But my chances of that are highly unlikely since endo is growing in my tubes and blocking them. And as well intentioned as the "well I knew a woman with endo who had a baby" comments are, I don't think people understand that it hurts when I hear of other success stories while I'm still sitting in the "failure" category.

So that's me in a nutshell. Not really expecting any replies...it's just nice to let it out.

safetymom
02-07-2007, 07:26 PM
:grouphug: I can't imagine what you go through. Post here it really does help.

Fan2CSkr
02-07-2007, 08:05 PM
I was where you are 17 years ago. Wow! That shocks me to put a date to it! There are 2 extremely knowledged endometriosis doctors (that's all they do) in NYC. After 3 doctors and 2 laporoscopies and years of trying to conceive I made a consult with them. I was put on Synarel (Nafarelin). It is taken as a single dose intranasal twice daily. Not only did my pain subside but I finally got pregnant shortly after being allowed to try. If you are interested here is a link.
http://www.mayoclinic.com/health/drug-information/DR202646

I hated all the comments more than the pain itself and I am so sorry you are having to deal with that too. I will be thinking of you and hoping for positive outcomes! :hug:

j's m
02-07-2007, 10:46 PM
:grouphug: for you, Mary. I didn't have endo, but we had infertility issues as well. To say it's heartbreaking every month that nothing happens is an understatement. I'll keep you in my prayers.

Pea-n-Me
02-07-2007, 11:42 PM
There are a lot of posters here on the Dis who've dealt with infertility issues, including me, so I'm glad you posted and can connect with others who understand what you're feeling. Even when you're years away from it, you still remember how it felt.

Has your doctor been supportive in looking for ways to help you conceive? Have you seen a specialist? I'd be happy to help you brainstorm if you ever want to, feel free to PM me anytime if you'd rather discuss privately. :hug:

luvwinnie
02-08-2007, 10:43 AM
Just wanted to send you a hug. I have suffered from endo since I was 15...38 now. My mom also had it and had a hysterectomy at 48 due to it. I now fear 2 of my nieces may have it.

Tinker'n'Fun
02-08-2007, 01:02 PM
Also have endo, but God graced us with 2 children, no fertility drugs needed....

You are in my prayers..

Mackey Mouse
02-09-2007, 09:08 AM
HUgs to all posting here..

I myself have not personally experienced endo but have had friends who battled with it and know how painful it can be..

I was wondering here and just throwing this out.....we are trying this for DH's illness and I know my daughter used it herself when trying to get pregnant and stay pregnant, so far she is entering her 6th month and after several miscarriages....anyway, have you looked into acupuncture?? It is worth a consult for sure if it helps somewhat, I know in our case, it helps DH and it helped my daughter..

Just throwing it out here..

Lassie Lynne
02-09-2007, 04:31 PM
I have just been diagnosed with endo myself, but alas, I have stage IV (I am 38 years old) and my endo is very very severe. I have never been able to conceive a child, but then, I never did anything towards that goal. I always thought "children will come when I am ready". By the time I felt "ready" then it was too late, the endo was too far advanced.

I am facing a complete and total hysterectomy next month, including my ovaries. I wish that I had gone in earlier in life and learned about my endo so that I could have had lap surgeries and taken medications earlier. I am so glad to hear that you have known and have worked toward your goal of children and keeping your reproductive health good...that is wonderful!!!

As for the questions, comments, etc. I find that people are well meaning, but sooooo insensitive. I never ever comment on another woman's fertility. I am even scared to talk to an obviously pregnant woman about her baby just in case "I might be wrong". I think that sometimes (depending on how you feel that day) the direct approach is best. Look 'em in the eye and tell them what you want to! I had a lady the other day ask me "don't you like children dear, you haven't had any, or are you one of those women who don't want to be bothered with children?" My answer...........I am one of those women that God decided that I was strong enough to endure having a disease that prevents me from having my own children so now I dedicate my extra love helping animals and family and friend's children, which is a much harder task in life.

Shuts them up everytime........

My best wishes to you and hugs!!

mking624
02-10-2007, 07:19 PM
Wow, thank you all so much for your encouraging words!!! It definitely helps to know that I am not alone in this battle, be it endo or infertility...and it's encouraging to know that people are there even if they can't completely relate.

We have seen an infertility specialist (he's the one who performed my most recent lap). Unfortunately our insurance doesn't cover any infertility treatment...only testing. Even if we did treatment and went back to testing, it would no longer cover that testing. Basically I'd have to permanently stay in testing without movement to treatment in order to stay covered...but that's kind of pointless. And now that we already know what's causing the infertility, there's no need to keep testing. Even the most "minor" of infertility treatments has a tendency to make endo flare up in people...something I'm not to keen on. Aside from that, we had already put limitations on how far we were going to do treatment, if any. We have various reasons for objecting to various treatments and right now we're taking a "break" before we pursue any other option. Of course, taking a break is hard enough...I feel like it's months wasted and then of course all those "what if this was THE month"...ugh, a never ending cycle.

Candi Lynne, I love your straight forwardness with people! I haven't developed that kind of strength yet, but I pray I do. People need to be educated! :)

so now I dedicate my extra love helping animals
I love this because this is what I do. Wildlife conservation and working with animals in general is my passion and something I'm striving for. I wonder if that passion would be there if we were able to have children from the moment we began trying. That's not to say I'm glad we didn't have children right away....but perhaps this time of trying did produce in me the desire and drive to care for creatures that don't have many who are a voice for them.

gabbysmom04
02-11-2007, 06:56 AM
I cannot say I understand what you must be going through.I am so sorry that you have to go through this. I do know what it is like to hear the "well intentioned" comments.My DS was born last year with a cleft lip and palate and a number of other major medical problems. I canot tell you how many comments people have made to attempt to make me "feel better." The more I thought about it the more upset I got. The fact is that no one can understand what someone is going through unless they have shared the same road of pain. I hated to hear about other people having "perfect" children. It made me feel terrible that I was not one of them. I wish you the best of luck, god bless you.

Pumbaa_
02-11-2007, 08:44 PM
Endo is evil. It hurts in so many ways.

I was in Stage IV at the age of 25, and had my 6th and final surgery then. Kids were not in my life plan. If I didn't have the disease, would they have been? Don't know. Not going down that road. I have the life that I have, a husband who I adore (and was married to when I had most of my surgeries) and I have no regrets.

The comments from others are the worst. I have made it my life practice to NEVER ask anyone if they have any children. I will ask you where you are from, occasionally what you do, always if you have any pets:) , but never ever if you have any children. (a friend of mine just lost a son at the age of 16, how do you think she feels hearing that question now?)

People are insensitive, unless they have gone through what you are going through. The hard part is we are programmed to be nice. And often feel we need to explain. Next time someone asks if you have children, smile politely, say no, and nothing else. If they ask the next question, (do you plan to or how come) smile just as nicely and say that is personal. And nothing else. Unless they are really really rude, they will get the hint and move on.

Stay strong, face the worst and make a plan b, c and D.

Good luck,

abaldacci
02-11-2007, 09:47 PM
:rolleyes1 some people are clueless hope you find a way to concieve and get ride of the pain.:grouphug:

PrincessSuzanne
02-13-2007, 09:25 PM
Hello Mking624, I can certainly fell some of your pain. I have mild endo on the outside of my uterus and it is blocking my left tube, and I am going through the infertility situation and let me tell you what pain I have felt. My DH and I have been TTC since we got married in December 2001 and haven't even had one of those "maybe it's this month" moments. I have been where you are with the insurance, and it really doesn't help matters much. I even told an insurance rep that they would better off paying for the infertility treatments or I would have to have Psych help, she just laughed and said that was a covered service.

Let me tell you that the pain gets better sometimes, I still have alot of pain in my heart, especially when all of the girls I work with are having one baby after another, then I work at a hospital with medicaid patients and seeing the "babies"(13, 14, 15 y.o.) having babies is especially hard. My co-worker recently revealed her second pregnancy in 15 months, and she told me that she had infertility problems (That is a hard one to believe). My best friend had a baby in October, that was hard, but she was very sensitive about it, especially when she was ready to tell me she was pregnant (of course I was thrilled for her b/c she supported me through all of my infertility treatments) and she deserved it, she is so very special to me.

I went through three IUI's and that was torture, I won't subject any more people to that torture. I was being filled with hormones and I was mean. It was the worst thing I could have ever put myself through. The RE that we saw, IMHO didn't treat me the same way he did the women that had money or insurance that could go to him for treatment until success. I have figured out that I am probably not ovulating, since I am so over weight, but I am over weight from dealing with the infertility, so I haven't figured out how to solve this problem. We can't afford IVF or adoption, so I have almost come to the conclusion that I am not going to have a child. I want to tell you it gets better, but some days I can't say that. I have finally gotten people that I know to quit making comments, but when a stranger makes a comment, it can be really hard to handle my reaction, it depends on my mood that day.

I even resorted to visiting the Ripley's Believe It or Not Corporate office to touch the African fertility statues, that is why I booked my first Disney Trip.

I am here if you need to talk, just pm me. :grouphug:

PrincessSuzanne princess:

Lassie Lynne
02-14-2007, 12:16 AM
Candi Lynne, I love your straight forwardness with people! I haven't developed that kind of strength yet, but I pray I do. People need to be educated! :)


Well, I couldn't have said that to someone when I was 26.......but at 38 years and having to face a lot of adult decisions, family stress, and basically a harder that normal life, yes, I can now, and you will too one day, in a postive way :hug: .

safetymom
02-14-2007, 05:29 AM
:grouphug: Sending hugs to all you women with endo. I can't imagine how it feels to have this but know that I care.

Pea-n-Me
02-14-2007, 01:18 PM
I have figured out that I am probably not ovulating, since I am so over weight, but I am over weight from dealing with the infertility, so I haven't figured out how to solve this problem. We can't afford IVF or adoption, so I have almost come to the conclusion that I am not going to have a child.
Princess Suzanne, have you been tested for PCOS? Your RE would be the perfect person to discuss it with and do the necessary testing. Here are some articles if you're unfamiliar with it.

http://www.womansday.com/health/6684/health-watch-pcos-you-saved-my-life.html

PrincessSuzanne
02-14-2007, 05:42 PM
Princess Suzanne, have you been tested for PCOS? Your RE would be the perfect person to discuss it with and do the necessary testing. Here are some articles if you're unfamiliar with it.

http://www.womansday.com/health/6684/health-watch-pcos-you-saved-my-life.html



I really appreciate the information, and I am familiar with it, and my RE wasn't interested in doing anything but the basics, because my insurance wouldn't pay for anything and I wasn't part of the rich crowd. No money, no treatment, and the only other RE in town went to jail for inappropriate behavior with several female patients and then he died in an auto accident, while awaiting trial. I went to my regular OB/GYN today and she wants to help me so badly, but it seems I have tried almost everthing she can offer me. I am going to try to take Glucophage and see if it will help me to ovulate, but I tried taking it in the past to help me lose weight and I couldn't tolerate some of the side effects. I have read everthing I can get my hands on about infertility and unless I win the lottery (I don't play) or money falls from the sky(when pigs fly), I won't be able to achieve my goal.

PrincessSuzanne princess:

PrincessSuzanne
03-01-2007, 05:27 PM
bumping to keep active

PrincessSuzanne princess: