I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!

Sunday, November 29, 2009


Physically, I feel awful. I am having terrible GI issues (incredibly painful gas-TMI, sorry) and esophageal problems. Perhaps from stress? Awfully familiar to a time when my endo was at it's worst. My abdomen is also terribly tender. So, OB issues or endo?!? I am going to the OBGYN tomorrow for a follow-up to my ER visit the other night. I've still been bleeding very strangely. But, perhaps this is my body's "norm". I'm hoping so...I don't need anything else going on. But, I passed 4 grape sized clots (golf ball is the alarming size apparently) and today didn't bleed much until a little while ago. It's almost as if these blood clots form...hang out for a bit then come out in droves, along with the blood. Not sure if that is normal. I know that clots are-it's the body's way of repairing where the placenta came away from the uterus. But, not sure if this is how it normally goes?

I've got a slew of questions ready for the OB. Including a request for more testing. If Wes and I plan on trying for another baby (which I assume one day I'll be ready for), then I'd like to check out everything before we head down that road. Not only is all of this emotionally investing....but financially as well. We can't go through this again for it to end the same if it's something that can possibly be prevented. I already have infertility issues (can't make them or keep them!); we just need to make sure we are equipped with whatever we can if there is something that can be done to prevent a similar thing in the future.

Tomorrow my family is heading back home and we will be alone for the first time since all of this happened. I know it'll be good for us to have this time together, but, I'm also very scared. Moving on to another phase of grief...


Lauren, Daniel, James and baby Brendan. said...

Please make sure you are getting enough rest and drinking a lot of fluids. I am worried about you.

I know you will probably think of this, but I would suggest writing down all of your questions and taking them with you so you don't forget to ask about everything you are wondering about. I know that has happened to me many times. Hoping for a smooth adjustment as your family heads home and you and Wes have some time together alone.

HUGS to y'all and continued prayers for everyone.

C Golden said...

Hello. I just started following your blog as I have endometriosis. I recently had surgery and I am endo free. I had Stage IV and it basically consumed all my organs. But I had the surgery and did the treatment and I am currently free of it. I have yet to read your whole blog but it says you are living with stage IV endo. Have you had the surgery to remove it or are you just dealing with it for now? God bless you and your family and your son in heaven.

Jeanne said...


I am so sorry you're feeling so awful. If you are feeling well enough to walk around or even (gently) do stairs occasionally, it might help with the gas pain. (Of course, it may increase the bleeding too). I'm not sure what to tell you about the esophageal problems. Didn't you used to have reflux issues awhile back? I'm sure the stress isn't helping matters.

I'm sorry to hear that the pain feels familiar to endo at its worst. Your body has been through so much. Hopefully your doctor will be able to help you figure out what is going on.

I can only imagine the list of questions you have for your doctor. I think you are very smart to get whatever testing you can done that might stand a chance of preventing something like this from happening again.

I didn't realize that you weren't home before now. It makes sense that you want time together with just your husband at home and yet it also makes sense that you're scared too because, as you said, you're moving into another phase of grief.

Good luck at the doctor tomorrow and I hope you get your questions answered. If you don't have them written down, it might be helpful to take a written list into your appointment.

Please remember you have many people keeping you both in their thoughts and prayers. I'm sending positive energy your way.


Kelly said...

Thinking about you! Hang in there!

allisyn said...

I'm praying for you allison! love yall :)

Nic said...

I am sorry you are in so much pain and having to deal with so much. I think it is a good idea for more tests so you know what your dealing with. I hope your body starts healing so you can begin to heal mentally.
Take care, my thoughts are with you

Yaya said...

I'm here for you.

Mo and Will said...

I don't know how I've missed your news, but I'm just catching up now. And I am shocked. And saddened. I can't believe that you lost Wyatt. My heart goes out to you completely. Hang on to Weston tightly. I am so so sorry.


Barefoot said...

I am so sorry that, on top of the grief, you are having to deal with such awful physical symptoms. I hope you're able to start getting some answers this week. Thinking of you.

Lena said...

i hope you're able to feel better (physically) soon. what you're going through sounds so hard.

have you done immune testing? i've been reading about it here...


i did the tests myself recently, but haven't gotten the results yet. my dr. was hesitant to do it because he said they test for women who have miscarried, and i've never been pregnant. but of course i wanted to do any test that might be a clue... and it sounds like it's closely linked with endo.

My Endo Journey said...

Hey C Golden-

I couldn't figure out how to comment on your blog. So, not sure if you'll get this response or not. Thanks for stopping by our blog.

I've had 2 laparoscopies for my endometriosis; the 2nd one was more so to remove the adhesions in the way of fertility and not to harm our fertility by removing the remaining adhesions. The first one was done to remove everything that was seen. I've also done a course of Lupron, Femara, and Aygestin.

I hope that your treatments offer you relief for a long long long while. Unfortunately, not everyone gets the same benefits from the treatments, as not every case of endo is the same. Such is the disease, which makes it ever so frustrating.

Thanks everyone!

Immune testing? I've been tested for several different things, including Lupus and other autoimmune diseases. I'll have to check this link out though Lena...thanks!

C Golden said...

I got your message. I guess we are both going through or went through the same things. I am glad I am not the only sufferer out there. For so long I had no idea what it was. Once this treatment is over though will be the real test. And I will keep you in my prayers :)

Lena said...

hi again,
oops, this is the link i meant to give you: