Adenomyosis/Endometriosis - options?

Hey all - sorry if this is really long...

I'm new here and first of all - what a FANTASTIC network of information and support!! I'm so glad I found this site...

A little history on me: I am currently 38 years old. I started my period at age 12. I was on birth control from age 16 off and on until age 35. I had the Essure procedure done when I was 32 because I've never wanted children and was tired of being on the pill. Due to severe PMS, my doc kept me on BC pills even after the Essure. When I was 35 (2006) I decided I'd had enough and have been off the BC pills ever since. (I now manage the PMS w/ vitamins, determination, and a lot of apologies for my mood swings...)

I have a high tolerance for pain but day one of my menstrual cycle completely side-lines me if I don't catch it in time with a handful of Ibuprofen. I miss 1-2 days of work every month because of my periods. It used to be that day 1 was unbearable, but the days after that were manageable. Then day 1 and 2 were really bad, etc. Eventually it's gotten to the point where I have cramps ALL FREAKING MONTH.

I've had too many doctors tell me it's all in my head over the years and throw antidepressants at me so I figured I just had to live with this. On August 31st of this year I ended up in the ER because I thought something had ruptured because the pain was so unbearable! (It felt like a rabid badger with claws made out of razor blades was trying to escape from my uterus...) They did an ultrasound and found three cysts and referred me to an OB.

My OB did an ultrasound and found fluid built up around my Essure sites. So I figured the Essure was the culprit and scheduled a laparoscopy. My OB said they'd probably remove the tubes and the Essure coils. My surgery was on September 10th but when they got in there they said my Essure sites look perfect. My tubes are perfect. They found three large cysts on my left ovary (one was about the size of a golf ball) they scraped the two smaller ones and removed the large one; cauterizing the wall to prevent another one from forming. They also found and removed endometriosis.

I went home with some Percoset and hopes for relief. Well, two weeks after surgery I got my period and went through the hell again; and there it is - the flippin' cramps all month long. I had my follow up visit with my OB yesterday and told her the pain is STILL THERE. Exactly the same as it was before my lap. I told her I'm taking 3 Motrins every 4 to 6 hours to keep the edge off but I can't live like that.

First she tried to push Lupron or BC pills at me. I told her about my experiences with artificial hormones and that is not an option for me - I do NOT tolerate them. I asked her if she thought there was ANYTHING ELSE that could be causing this. Then she said 'well your Uterus DID look a little boggy; it could be Adenomyosis'. I've never heard of that but after doing some research I believe that very well could be the issue. My doctor told me to think about what I want to do next and call her when I've decided.

I don't have the severe bleeding (thank God) - I bleed very heavily the first day but then it levels out. It's the PAIN that I can't cope with anymore. I've decided that I want to have a partial hysterectomy. Looking at the photos from my lap - the endo looks extremely minor; so I think that by keeping at least ONE (if not both) of my ovaries I should be okay.

My question is about the cervix: do I keep it or have that taken too? What is the difference? I didn't know there were so many different types of hysterectomies until I got on this site... I do know that I want to keep at least one ovary so I don't have to do hormone replacement. Other than that - I'm completely lost.

Sorry for the novel and thank you to anyone who reads it!!
Christine

((Christine))



Let me see if I can offer you some helpful information!

The cervix is the bottom portion of the uterus and not a separate organ. Thus, it can be difficult for a doctor to know exactly where to cut to separate only the cervical portion of the uterus. With issues such as endometriosis and adneomyosis, the cervix can be involved and leaving it can allow for future issues. So carefully consider this aspect and discuss it carefully with your doctor to determine if a partial hysterectomy is an option for you or not.

Some women feel they need their cervix for sexual pleasure and pelvic support. There is a lot of debate on this topic and not all doctors agree as to the benefit of keeping or removing the cervix. Mine was removed along with the rest of my uterus as my cervix was affected by endometriosis. I have had no issues with it being gone! Never noticed having it (except the abnormal paps for the endo) and I don't notice its absence (except for normal paps again!).

As far as your diagnoses, adenomyosis is cured with a hysterectomy. However, if you have a partial hysterectomy and some is left with the cervix, then you might have some issues. Endometriosis is not cured with a hysterectomy (or oophorectomy) and it only takes a tiny bit of it to be excruciatingly painful.

A hysterectomy is a major surgery so you do want to carefully weigh all of the pros and cons for you. I was one who did have a lot of surgical complications that negatively impacted my life for years. You want to be sure that if the worst happens (and hopefully it won't!) you will be okay with your decision.

You may also want to read through our Endometriosis and Adenomyosis Resources to learn all you can about both conditions before making your final decision. I would also strongly recommend seeking at least a second medical opinion before you make your final decision. If at all possible, find some type of endometriosis specialist who can help make sure the endometriosis really was all removed carefully.

While you are working through this decision process, you may want to see if your doctor will prescribe some pain medications to help you manage your pain.

Keep searching the site, reading the threads, and posting your questions! The more you know, the better able you can be to make the best decision for you!

I'm seriously at my wit's end. I'm in agonizing pain: all across the front of my pelvis, radiating up into my rib cage on the right side; across my right butt-cheek down the back of my right leg and even into my rectum!! Seriously cannot live like this. The ibuprofen is no longer working, and since I have to function (drive, work) I can't take any of the stronger stuff they've given me to take. So I'm sitting here at my desk crying because I don't know what to do.

I do NOT have an emotional attachment to my uterus, I've never used it for it's intended purpose and since I've been fixed for five years it's obvious I never intend to; I feel in my gut that my issue is with my uterus so I want it GONE. I don't understand why my doctor is so reluctant! She keeps saying 'you're a young woman' and yet her first option is to throw me into a chemical menopause: which is a temporary fix anyway from what I've read!!

I am barely stage 1 endo; it was so minor that even she admitted that it's highly unlikely that the endo was the cause of my pain. I'm sorry if I sound so grouchy but I'm just frustrated and desperate.

I'm not sure if this will help any but I had terrible cramps, alot like what you were describing. They did an exploratory lap at the beginning of august to check for endo and found nothing so we proceeded with the hyst at the beginning of sept thinking it was adeno. The dr said my uterus was saggy and floppy when he took it out but the pathology said it was all clean. I'm only 3 1/2 weeks out so I can't tell if the cramping I'm feeling is from healing or the cramps starting back up, hopefully the former. The gyn I originally had pushed Lupron like she was getting a kick back from the company so I found a different one and he listened to me. I hope your able to get what you need done for your body, it can be a long road to get to the end sometimes.

THANK YOU elleisous... I needed to hear that: makes me think I'm not totally crazy... I have another doctor all ready to call if mine doesn't come through for me. I hope you feel better and that you find relief! If you were dealing with I'm dealing with now; boy do I feel for you!!

hugs!!!
Christine