PERSONAL STORY: ROBYN MYERSWhen you are dealing with a major health issue, and still trying to keep a positive attitude, sometimes you can feel like "Eeyore in a Tigger Suit." While you try very hard to be happy, positive and cheerful on the outside, you often feel awfully gloomy on the inside. For many years now I have been struggling with infertility and chronic pelvic pain, caused by endometriosis, benign fibroid tumors, and adhesions resulting from previous surgeries. Through the wonders of the world wide web I have been able to research my condition, finding information to share and discuss with my Doctors. I have also been able connect with other women experiencing the same things, make new friends, and support each other.
The Early YearsI believe I've probably had endometriosis all my life since my first menstrual cycle in 1972. I can, unfortunately, remember most all the major (and minor) events in my life by whether or not I was on my period. Many of the most exciting, joyous and adventurous memories are shadowed by the pain and hassles of endo.Why Am I in Pain?I had my first diagnostic laparoscopy in May 1989. The doctor found no endometriosis, but did find two external fibroids. We decided to take a "watch and wait" approach. If I knew then what I know now I'd never had done that! The "fibroids" became the reason for my pain and I decided to "live with it" to preserve my fertility.Why Am I Not Getting Pregnant?By about 1995 I finally "noticed" that though I'd been off birth control since early 1992, I had not gotten pregnant. My regular OB-GYN ran all the usual tests, and figured probably I had more fibroids, and so referred me to a Reproductive Endocrinologist (RE).The Roller Coaster Ride BeginsI kinda dinked around waiting to see the RE because I knew no matter what he found the answer would be "surgery." The RE ordered an MRI and found I had at least 22 fibroids. He scheduled a myomectomy/laporotomy for May 12, 1997 where he removed 43 fibroid tumors (!) and "patches of endo". This was my first real diagnosis.After regaining my strength in 8 weeks, I was devastated to find I was still in pain. I was so mad and disappointed! After MUCH persuasion on my part he agreed to a follow up lap. He found scar tissue on my left ovary and an inflammation under the anti-adhesion material he'd used on my uterus and so had to remove it. Now, he said, you should feel better and we'll start fertility treatment. But, my hormones were all out of whack. Progesterone was low, thyroid was low (medication in need of adjustment). I bled for a month straight. I still had my terrible abdominal pain all month long. It was barely controlled with vicodin and motrin. Rather than do yet another surgery, my doctor wanted to get right into treatment. So, finally, after a month on birth control we started IF treatment. Up and Down and Up and DownWe did four clomid/IUI cycles until I developed an ovarian cyst and had to wait several months on birth control. Then two cycles of Pergonal/IUI and again a cyst. Each cycle my abdominal pain got worse and worse.Even Doctors Retire!Then my doctor announced he was retiring May 1999, so I pleaded with him to do one more laporoscopy before he retired. He found an adhesion between my uterus and bladder, an adhesion on left ovary, endo on pelvic wall/peritoneum (which he excised), and he transected the utereosacral ligament (for endo and pain). I then went right back into fertility treatments: repronex, hCG for ovulation, progesterone to support the luteal phases. No success. The pain returned 5 months later and gets worse each month.Now what? I've tried everything!I've tried taking motrin (which helps, but upsets my stomach and causes ovarian cysts), heating pads, stretching, doing deep belly-breathing, meditation, visualization, hobbies, journaling, acupuncture and herbs, walking and SLEEPING a lot! All help some, but none enough to live with. I've been on low dose narcotics for 4 years (2 vicodin a day, until recently when I had to up it to 4 per day). It, at least, allows me to function. When it wears off, all I want to do is sleep. Of course, I suffer from the usual hormone induced depression not that endo, fibroids and infertility weren't enough!The pain gets worse each month. After years of support from the infertility community, I feel like I am facing this new, horrible, decision alone. The endo, fibroids, and surgical scar tissue seem to be getting worse. My bladder hurts all the time, as does the left ovary. I'm sure the adhesions are back. Three years of infertility treatments have made it all worse. So now I consider hysterectomy. I also understand the risks of surgery and that it is no guarantee to fix things. I cannot keep living like I feel right now (with the increasing pain), but am terrified that yet another surgery may not fix the problem. I know women who have both kinds of results: the best thing that ever happened to them, and worst thing. Some ended up with horrible menopause symptoms that HRT couldn't help, and others with terrible scar tissue leading to more pain and suffering. But with no alternatives, I'm almost ready to just have that "one final surgery" and "hope for the best, and prepare for the worst." My surgeon has recommended that if I choose a hysterectomy, to do a "LAVH" (laparoscopically assisted vaginal hysterectomy). This allows him to remove any visible endo and scar tissue, and to minimize any more scar tissue from forming. But he also recommended I try Lupron first. I've been afraid to try it due to the "horror stories." But at this point it seems the reasonable thing to do. He recommends two weeks on Lupron, before adding back HRT. He said if I feel no relief after 6-8 weeks, to schedule the surgery. If I do feel relief, then we can keep up the Lupron for six months out of every year for as long as it works, and I am healthy (bone density, blood pressure, etc...). It sounds reasonable. I hope to have my baseline bone density, blood pressure, cholesterol and other things checked before I start. If it doesn't help, he says being on Lupron for 6-8 will shrink the fibroids and endo, and diminish their blood supply, again making surgery easier and lessening the chance of scar tissue (which bleeding can cause). Update: 04/19/2001 The good news is that the Lupron really helped my abdominal pain. It really helped the pain from my left ovary that is attached to my pelvic wall. This pain was constant, and not helped by pain meds. It has been gone since starting Lupron. My general uterine abdominal pain is MUCH reduced, so much so that with my Vicodin/Relafen combination I actually have experienced a few "pain FREE" hours, and the rest of the time the pain is at a level I can manage with. For about six weeks during treatment (between injections 3 and 5) I actually felt pretty good. The pain was controlled enough that I felt energized and able to do things. The bad news is, although I've been on add-back Hormone Replacement Therapy and have not experienced most of the Lupron side effects, I have experienced one, in a BIG way. Joint pain. Unrelenting joint pain. It started after the second injection and lasted for about 6-8 weeks where every paired joint in my body ached with arthritis-like pain. I told my doctor (and asked the ladies on the boards) and they all said, yes, this is a common side effect which usually goes away, or subsides, in a few weeks. It did. In mid-to-late January the joint pain subsided to a mild ache, and soreness in specific joints. (This was that same 6 weeks I felt so good.) Then one week after injection 5 the arthritis-like joint pain returned and has not yet subsided. Again, it is a severe, aching burn in ALL my joints, all the time. It comes and goes in intensity, but is not much affected by my pain meds. Most of the time it is at a level 4-5, but often flares to 6 or 7. Pain meds bring it down one level. I contacted my Doctor after a week and he had me increase my estrogen add-back. When that didn't help, he had me skip my 6th and final Lupron injection and started me on Levlen (low dose, progesterone dominant birth control pills), continuous for 3 months, to see if we can retain the benefits of the Lupron, while easing the pain in my joints. He wants to wait and see. If the joint pain goes away, then he says we might want to consider Lupron again if my endo symptoms come back. (I don't know about that!) He is hoping that the Lupron did its job and that on continuous BCPs he can keep it "in check" (by preventing ovulation). That seems like a better solution to me, if it works. We'll see. It's been three weeks and there has been no change in my joint pain so far. My regular doctor is referring me to a rheumatologist to see if they can help. Joint pain is a known side effect of Lupron. "Joint disorder", Tap says, "is a physiological effect of the drug." But other studies on the joint pain indicate the mechanism is not known. If it IS hypo-estrogenic in nature, then that would indicate that I will have trouble in the future and should probably avoid a LAVH-BSO. If it is simply a side effect and will go away, maybe I have nothing to worry about. Joint pain is one of the side effects that often does NOT go away after stopping Lupron (see http://www.endocenter.org/lupron.html). If I am hereditarily predisposed to arthritis, then any treatment that lowers my hormones will put my joints at risk. Ack-ack! So I'm hoping the rheumatologist will help me sort some of this out. Just what I needed, another potentially chronic condition! LOL!! Hugs and aloha,
Robyn Myers |