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I am afraid


Forum: Trying to Conceive with Endometriosis

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  #1  
February 11th, 2010, 03:45 PM
Lex&angels's Avatar Mega Super Mommy
Join Date: Nov 2009
Location: France
Posts: 3,736
The pain.
I've been reading all about endo online.
And I'm afraid this is it. And paradoxally, I'm afraid it's not.
Because if it isn't - then what is it?
My gyno said everything looks normal. My ultrasounds have all come up normal.
The next step is a lap, right?
I'm so afraid of that. I've been reading french websites about it and it involves about 20 days off work here. I'm a temp. So if I get the lap to diagnose, I'll get the pain, the fear, the diagnosis I both need and dread, and I'll probably be unemployed to boot.
And if there's nothing... I'll be labelled a hypochondriac, unemployed, a drama queen and the pain still will be there, just no idea why.
I'm afraid.

I have horrible period pain (and have for the last 2 years, it's getting worse). I have mid-cycle spotting frequently, constipation which is incredibly more painful/worse during AF, I've missed so much work because of my pain.
And I have dull aches, with occasional stabbing and lower back pain during most of the rest of my cycle, I'm tired all the time...
I HAD an ovarian cyst in September, no cysts as of Feb 1st.

I am afraid.

And the pain is flaring up right now. I shouldn't go to work tomorrow but I have to because if I bail on my collegues I'll never hear the end of it
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  #2  
February 11th, 2010, 04:01 PM
angel3y35's Avatar Mega Super Mommy
Join Date: May 2009
Posts: 2,810
I'm so sorry you're going through such a rough time right now. Nobody will ever understand the pain or needing to be off work unless they've been through it. Have you read why it means 20 days off work there? I had my 3rd lap Monday and am planning on going back to work tomorrow. It's honestly not a bad surgery, the pain is minimal, more soreness than anything. I know that it's a scary thing thinking about having endo but it honestly does give you a sense of peace knowing that you have it. It sounds crazy but the endo diagnosis was one of the best things that's happened to me. I don't feel crazy anymore All you can do is take it one step, one day at a time. Plus, as women with endo, your best chance of getting pregnant is the 6-8 months after a lap when everything has been cleaned up and out.

If you have ANY questions about endo, symptoms, pain relief, treatments, tests, ANYTHING please don't hesitate to ask. You can PM me if you need too. Know that we've all been through it/are going through it and understand.
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Thanks to :shortcake: for my siggy

Our adoption miracle born 12/31/13


06/2004 - Lap for endo and cysts
08/2006 - Lap for endo and cysts
02/2010 - Lap for endo, cysts, and hydrosalpinx repair
02/2011 - Lap for endo, cysts, and RSO
12/2011 - TAH and LSO
5/2012 - Lap for adhesions
4/2013 - Lap for adhesions
Stage IV endometriosis, sever adenomyosis, PCOS, IC
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  #3  
February 12th, 2010, 12:22 AM
Lex&angels's Avatar Mega Super Mommy
Join Date: Nov 2009
Location: France
Posts: 3,736
THANK YOU!
I've always assumed that period pain was "normal" even though it was bad - because everyone seems to think it is.
It was the mid-cycle pain (like, from CD 11 to CD 19 is the worst for me, although I usually O between CD 20 and CD 26) that threw me off. Plus ovulation pain (but I always thought that was good)
At first I let it go figuring it was just bad constipation or indigestion. After a few cycles I asked my doctor to look into it. U/S -> I had a cyst and blamed everything on said cyst.
She said to get an u/s at the beginning of the cycle after my next one. Well that coincided with christmas. So I got it on Feb 1st. No cyst. I was so relieved especially since the pain was horrible during AF, so I was happy to "know" that this cycle would probably be pain-free at least until O.
It's not.
Then I started talking to Rebecca (Rebroche) about my fears by PM since I knew her from TTC #1.
Last night i had a complete breakdown where I read all about it online and went through an entire kleenex box.
I read about it on a french website and apparantly they keep you for like 5 days in the hospital (standard procedure) and then you have 2 weeks or so off work with a nurse coming at home to dress the wound every few days.
Healthcare in France is... different.
Which isn't a bad thing. Honestly though having a few weeks off work could do me a lot of good. It's just as a temp I'm not sure they'd renew me!!!
This morning I'm still not feeling good but I'm on late evening shift, my other collegue who is on it with me bailed, and another who is on day shift is on vacation.. So I can't abandon them (2 people instead of 5 to take calls = BAD)

I am afraid of the surgery, I am afraid of being a parent when I have this bad pain all the time/this fatigue. How am I going to cope with a baby or a child who needs me when it feels like I'm being stabbed repeatedly in the gut?
Ugh I'm going to stop typing or I won't be able to put myself back together before work.
My DH tries to be understanding but I think he thinks I'm just overreacting, that it could still be something else, that maybe the lap won't find anything if I get one.
Yeah. Then I'll be sent to the loony bin. That'll be awesome.

ETA : I'm not sure I even want medical procedures at all... Could I just go on living with this, managing pain with BC and adopt? I've always liked the idea of adoption and while I would LOVE to go through pregnancy and have a biological child, DH and I were considering going the 1 biological, 1 adopted route anyway.
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Last edited by Lex&angels; February 12th, 2010 at 12:26 AM.
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  #4  
February 12th, 2010, 07:33 AM
*Mommy2Remington*'s Avatar ~MommyTo2~
Join Date: Jul 2009
Location: Arizona
Posts: 1,977
Hello, I was diagnosed with Endo almost 4 years ago, and like Paige said, It is the best thing that has ever happened to me because now I know where the pain is coming from, why its happening and how to 'temporarily' stop it.
You learn to cope, I mean, when I was diagnosed I couldn't shake the fact that this "disease" was here to stay, no cure, no nothing. But,as you take that into consideration- you learn how to adapt your life around it. DH knows when my 'couch days' are. If I am in so much pain that the couch is my only place of comfort, he knows the drill that he'll have to cook dinner, clean the kitchen and do other chores for me. But honestly, its not everyday that Im in such severe agony that I feel as If the world is ending. After paying attention to my endo due to TTC, I know what makes it flare and I can sort of 'predict' when I will have my bad days and so it gives us time to prepare.
Can't say things will get better but things will become easier when you are diagnosed because you KNOW what the pain is and as a mental coping mechanism- you feel such relief. Don't think of it as a life altering thing. Think of it as something you can now blame your pain on.
You can still be a mother with Endo, you can still give birth to your own child with Endo. A quote I use often is "I have Endo, but Endo does not have me" -- meaning dont let Endo run your life. You're alot bigger and stronger then it. So tell it whose boss, tell your endo your plan of being a mom and mentally prepare yourself that you can still do whatever you want, even if you have endo.
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  #5  
February 12th, 2010, 08:26 AM
~*Jackie*~'s Avatar Platinum Supermommy
Join Date: Apr 2008
Location: The Land of Infertility
Posts: 16,093
I couldn't have said it better than the ladies already have. Keri- I could have written your post word for word- it's crazy!!!

I am now a big laparoscopy advocate. I was scared to have it also, and deep down I knew what they'd find due to the extent of my pain, but I'm glad I did and I know I'm not crazy for how bad I have pain. After AF would go away, I would start to say "well, maybe it wasn't as bad as I said it was" and started second-guessing the severity. Unfortunately, I have stage 4 endo, most of which can't be removed because of where it is (between my ovary and bladder and on my intestines), BUT, I have an easier time living with it. I don't think the type of pain you are describing, Lexi, is normal, and it does sound a lot like it could possibly be endo symptoms. But like Keri said, it doesn't mean that you can't still have your own babies and be a good mom!
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Thank you brie_91 for this fabulous siggy!!
Our TTC journey: 6 cycles Clomid, lap surgery/ D&C, IUI, 2 x IVF; 33 cycles- BFN.
IVF#1 (March 2010) Transferred two 8-cell grade A (perfect) embies- BFN and heartbroken.

IVF#2/FET#1 (Jan/Feb 2011):Transferred two (7&8 cell) grade A (PERFECT) embies- BFN again.
March 2011- February 2012: On BCP due to endometriosis.

March 2012- taking a few months off of BCP and we are TTC naturally.
We will re-evaluate another IVF w/FET try in 2013.



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  #6  
February 12th, 2010, 09:47 AM
angel3y35's Avatar Mega Super Mommy
Join Date: May 2009
Posts: 2,810
I had a lot of break downs in the beginning. I was begging the doctor to do a total hysterectomy/oopherectomy. I didn't think I could deal with it. I'm so glad teh doctor didn't listen to me now. My plans are still to have one pregnancy, whether is one, twins, or triplets, and have everything taken out afterward. It's in no way a cure and could still come back but having your ovaries removed as well helps.

ETA : I'm not sure I even want medical procedures at all... Could I just go on living with this, managing pain with BC and adopt? I've always liked the idea of adoption and while I would LOVE to go through pregnancy and have a biological child, DH and I were considering going the 1 biological, 1 adopted route anyway

Read more: http://www.justmommies.com/forums/f1...#ixzz0fLRDh1D2 (I am afraid)

Depending on the severity and location yes it would be possible to manage it with BC. I tried BC to begin with and it just didn't work. I did a lap and my first few AF after it were just as bad so I went on Lupron for a year. First AF after that was horrible as well so I had a second lap. A few months later the pain was back again and the Dr. put me on the Depo shot. That worked wonders!!! I had to have the first 3-4 shots about a week to week and a half early until it got in my system. I still had the random ovary pains throughout but those are mostly managable. The Nuva ring also helped a lot. Pretty much when it comes to BC to control endo pain the fewer periods you have the less you'll be in pain.
__________________

Thanks to :shortcake: for my siggy

Our adoption miracle born 12/31/13


06/2004 - Lap for endo and cysts
08/2006 - Lap for endo and cysts
02/2010 - Lap for endo, cysts, and hydrosalpinx repair
02/2011 - Lap for endo, cysts, and RSO
12/2011 - TAH and LSO
5/2012 - Lap for adhesions
4/2013 - Lap for adhesions
Stage IV endometriosis, sever adenomyosis, PCOS, IC
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  #7  
February 12th, 2010, 10:03 AM
Lex&angels's Avatar Mega Super Mommy
Join Date: Nov 2009
Location: France
Posts: 3,736
Thank you so much !
Well today I left work early because the pain was bad, and when I took a break to call my Dr's office I found out the ONLY spot they had until Monday was in an hour and a half. I called my gyno, who's office is closed already for the week-end.
So I decided my health was more important than staying at work and went in to see the doctor. I showed him my ultrasounds, my full medical history, especially of the cycles since stopping the pill, explained in detail the pain, when, how and what.

At the end he said it sounded like endo (I didn't mention it at all, he drew the conclusions himself) but that it could be another cyst, a new one since my last u/s (on feb 1st) so he sent me to get a TVU. 15 minutes later I blacked out as I always do to forget that I'm all but naked, on a table, with a stranger examining me and NO cyst, everything looks normal, the u/s tech seemed to think "it's just one of those things..." and seemed sceptic about endo. But my doctor is commited to finding out what is wrong with me, and that is a HUGE help.

I was really down today, but it's so empowering to leave work despite what they may say and just take care of myself without worrying too much about the consequences.

The doctor mentioned that the next step would be an MRI during my period. He gave me some pain meds that should specifically help with the cramping.

I do the second-guessing a lot too, Jackie, and I almost need my husband to remind me, or someone who was THERE and SAW me in pain to remind me that yes, it was really that bad. My collegue and only friend at work really pushed for me to leave and see what was wrong. And I'm glad he did.

I'm so glad my doctor doesn't think I'm crazy and actually listened. My previous doctor before the move kept telling me it was "just" O pain - although I NEVER O this soon - or "just" cramps, and that my BBT wasn't reliable and how could I possibly say that it was too soon to be O for me, or that I was probably having the stomache flu although I had none of the other symptoms.

I'm in a much better place tonight. And an MRI doesn't sound scary.
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