Wednesday, July 11, 2012

Endo, adeno and I

Amid moving, taking care of the trio, unpacking, and now a kitchen renovation (yay, but holy crap that's stress*&^#!!), I have been dealing with immense pain. The kind of debilitating pain that has me doubled over just to catch my breath.

I have a high pain threshold, but I'm telling you, if I didn't have kids to take care of, I'd have made several trips to the ER these past few months. I suspect a cyst ruptured the one night, because I was in even more pain than usual.

The pain comes on when I'm upright for more than 5 minutes, and I can only describe it as feeling like I'm in active labor. It literally feels as if my insides will fall out if I don't crouch down or lay down. Then, after being seated or stretching/twisting my body, it subsides long enough that I can function again, but the pain never goes away completely.

After decades of living in pain and just thinking it was completely normal, I was diagnosed with Endo in 2008 during a routine fertility workup. The RE who performed the surgery was shocked that it was actually stage 4. (There isn't always a correlation between pain level and the stage of Endo.) I consider myself very fortunate to have been pregnant and carried a triplet pregnancy.

Naïvely, I bought into the false hope that pregnancy would stall the growth of endo, and therefore ease the pain. It did go well for a while there, but the relief of the operative laparoscopy and pregnancy only lasted until a few months after the C-Section. It's been downhill ever since, with each month being more excruciating than the one that went before. Mostly, I've been too busy to take care of myself. Until I could ignore it no more.

I have pain from hip to hip, and from my ribs to my pubic bone. Sciatica-type pain in my legs from time to time, back pain, and constant nausea. The pain and nausea is very similar to what I dealt with prior to the laparoscopic surgery, which leads me to believe that I may have bilateral complex cysts and additional adhesions again. But this time, there's also an additional layer of pain I have never felt before.

On the day that we moved (crazyness!), I went to see a specialist. Just imagine, for a moment, the logistics that entailed. Me being able to sneak away while my husband and best friends continued loading the moving truck and took care of our kids.

The surgeon suspects that I have both endo and adenomyosis (that's when the lining of the uterus grows directly into the muscle wall of the uterus). I will be going for an MRI with contrast on Friday, and the surgery is scheduled for the end of the month. They wanted to do it a few days after my consult, but I needed to unpack and get the kids settled in our new house first.

I have no idea how I'm going to care for my kids after the surgery, but my kids' godmother (one of my closest friends in the world who should be considered for sainthood) has offered to care for them while I recover. She is an amazing parent and my children adore her and her family. They will have a blast, but I'm not quite sure how I'm going to remove myself from the party.

If the surgeon can't diagnose adenomyosis with the MRI, then I have the option of not undergoing a hysterectomy just yet, but having the adhesions resected again. If the MRI is positive for adenomyosis, then a hysterectomy is advised. Of course, I can choose to do nothing and continue the charade that I'm coping. I'm just really frustrated with the pain. It has worn me down to the point where I see no alternative.

I always enjoy reading every single comment, but if you struggle with endo or have had a hysterectomy, I'd definitely like to hear from you.


Anonymous said...

As you know, I had (have? do you ever get de-staged, even after surgery?) Stage IV endo and adenomyosis. Obviously, I didn't have the adeno treated surgically, as I never want to have a hysterectomy (obviously) if I can help it. After my surgery, I did continue to have pain with periods, but several months after surgery went back on the natural progesterone cream and after only a month or so saw RELIEF. Big time. Natural progesterone is fantastic to treat endo, also (along with excision surgery - as a complement), and it shrinks the disease implants, which is pretty handy for adeno as well. You can read more about it here:

I bought mine at a compounding pharmacy over-the-counter in Cape St. Claire and it was about $26 for a three month supply (I was only taking it after ovulation until cd1).

I can't recommend it highly enough!!! My little sis has been able to keep the majority of her endo pain at bay using it and as of yet hasn't had to undergo surgery. I really can't tell you wonderful it is - and without the side effects of oral progestins.

I'm really sorry you're having pain :(. Hope you can find something that works soon! Good luck with your surgery!

jenicini said...

I don't know if you read her, but SIF at has severe endo and has had a couple of surgeries with a doctor who is a pioneer with endo. It might be worth reading her story or contacting her. She's wonderful. :)

Nic said...

I can really relate to the pain and nausea. I'm 28 and was diagnosed at 18 with grade 4 endo. I have chocolate cysts on my ovaries and have had to have appendix and broad ligaments removed in the 3 laparoscopies I have had so far. No doc has ever looked for adeno, so that is something I will ask. I have had 3ivf and 3 FET, all failed. The pain of my endo has got a lot worse since my fertility treatments. I dream of the day I have a hysterectomy, but I am young and have not had a baby yet. I just can't bring myself to yet. Some days I wonder how I ever cope but everyday I get out of bed and go to work. Well done for looking after your trio! Good luck with MRI and surgery. X

Lisa B said...

I was diagnosed with adeno, purely on symptoms alone - no tests. I ended up having a hysterectomy at age 37. My kids were old enough that I wasn't planning any more.

It was the best thing I ever did. Apart from the day of the operation I felt better than I'd felt for years. It took me about a month or so to get back to normal - my hysterectomy was vaginal so no big scar in my tummy.

A hysterectomy won't stop the endo from reacting to your monthly hormone fluctuations, unless you have your ovaries removed too.

Hope this helps.

Stacie said...

I started having pain after I had my first c-section (twins delivered at 28w). I could tick every single endo symptom off, so the RE thought that maybe I did indeed have endo. After my lap, it was discovered that I didn't have endo, but instead adhesions from my section. It was everywhere. There was so much that the surgeon actually broke scrub to come tell my husband that it was one of the worst cases he had seen in a while. I have since heard that adhesions are increased for premature deliveries.

Did you have a c-section? I wonder if that is in play here, too?

My Endo Journey said...

Sending loving thoughts your way! I have endo and now they think adeno as well. Double whammy? I hope the MRI goes "well" and you can get some answers you can work with. And RELIEF!!!!!!!!!!!!!!!