My View: The Big Picture

Based on what I have learned from reading about endometriosis, is that the current state of endometriosis awareness by the general public, as well as knowledge of the medical community, has a long way to go. I applaud the efforts of organizations such as the Endometriosis Association and the Endometriosis Research Center.

There is no cure for endometriosis at this time, but there are various methods of treatment available. I personally believe what I have read from the top endometriosis specialists, that endometriosis is a "surgical disease" and can best be treated by excision – removal of the disease – by an endometriosis specialist who focuses on endometriosis. The doctor should be comfortable with excising endo from all areas of the pelvis, including the uterosacral ligaments, bowel, bladder and ureters. This will provide the best possible chance of relief of pain and other symptoms. It is not a cure, that is known…but the chance of no recurring endo or pain/symptoms is higher compared with other surgical treatments, such as laser vaporization, electrocoagulation and cauterization. These methods are known to burn shallowly and leave endo behind. Women who are treated using these methods are often told their endo is gone, but believe when the pain returns that their endo has "come back." Usually, it was never removed in the first place, and is still there causing pain. If endo cannot be removed because a doctor is not skilled, then often a woman is offered dangerous hormonal suppressive drugs to "kill" the remaining endo. The endo specialists, however, know that these drugs do not eradicate endo from the body…they suppress its growth and can shrink existing endo, but when the drugs are stopped, the endo is very likely to recur and often does.

For me, I feel that based on the high risk of serious side effects of these drugs, many of which can last well beyond the cessation of the drug, are not worth the "possibility" of pain relief. I read both good and bad stories about these drugs. At best, one would have pain relief and no side effects. At worst, one would have no pain relief and many side effects. The decision to try these drugs is a personal one, and above all, I respect everyone’s decision for any  treatment, even if it includes these drugs. Everyone with endo is trying to find their own way to pain relief and that must be respected. There are some women who find success with these drugs and are happy with the outcome. I have read from women who are against these drugs who actually are upset with the women who have had good results…I think that’s wrong. I don’t agree with taking the drugs because I think that the percentage rate for success is too low for a drug with such serious side effects, as well as for the fact that in the majority of cases, the symptoms are pain, not life and death, like cancer. That is not to diminish the feeling of pain. I know it well and hated it. But the fact was, that no amount of research or reading women’s stories (good or bad) was going to indicate how the drugs would affect my body. If I took it, and traded pain for bad side effects or diminished functionality, I was the ONLY one who was going to have to live with it. Not any other woman, the doctor, the drug company rep…no one but me. I just didn’t want to risk becoming a statistic, a victim of the drug and the misinformation that surrounds it. Too many women said they took the drugs and suffered horrible side effects, only to be told there was no way the drug caused the problem. Imagine that…you’re generally healthy, other than endo pain/symptoms…you take a shot and develop depression, joint pain, nausea, vomiting, memory loss and all the other symptoms proven to be side effects of the drug, but are told by your doctor – someone you trust and rely on for medical advice – no, it’s not the drug?? I wasn’t planning on letting anyone do that to me!

I had the power and the right to refuse to take the drug. But with that said, I again respect the right of any woman to make the choice to take it. What I do hope, though, is that prior to making the decision, she is properly informed of the side effects of the drug by her physician. I also hope she is given truthful information about the drug about the side effects and that it is not a cure. This of course, holds true about any form of treatment for endo, including surgery.

It is sad that so much misinformation and myths abound regarding endometriosis. The amount of women who come on to message boards saying that their doctors told them a hysterectomy and bilateral salpingo-oophorectomy (BSO) is a cure; or that they can’t still have endo after a hyst and BSO. Others are told removing endo from the bowel (or bladder, or ureters) is dangerous and should be treated medically…that is, that doctor does not have the experience to remove it. Others are misdiagnosed with IBS, bladder problems, etc…and are sent to multiple doctors and tests when their endo is simply not being removed - remove the disease, remove the symptoms.

The other problem is that if a woman does want to see an endo specialist, sometimes she might feel that she can’t because she has an HMO and must stay in network. That is not always the case. An HMO is a complex organization, comprised of contracts: a contract between you and the HMO as well as the HMO and their doctors. It can be a daunting process to fight your HMO to see an endo specialist. It requires reading your contract with your HMO, and knowing the HMO laws in your state, which might require an HMO to refer you out of network if your doctor determines you need a certain procedure which is not available in network. You might also have to fight your doctor to get him or her to agree to refer you out.

Unfortunately, as I learned from the book "How to Play HMO Hardball", many doctors are not willing to go against the HMO which pays their income. HMO doctors are typically paid on a basis called capitation - they get paid a fixed fee per member, per month, by the HMO.  PCP's are monitored very carefully for the services they provide or recommend in an effort to contain costs. Penalties for too much testing or treatment are common, and one often must fight to get the proper treatment. However, if you establish a good relationship with your doctor, and are able to work with them to have them recommend this treatment, and refer you to an endo specialist, you have started the process in a good way. Your doctor’s support is important and helpful but not critical (especially if they like the capitation system). You can build a case for the referral yourself with proper supporting documentation. In any event, keep written records of all communications, faxes, and phone calls. A trick I did was when I was talking to anyone at my HMO, at the end of the conversation, I would repeat back everything they said, to confirm. I used a slow, deliberate tone clearly indicating that I was writing it down everything they said – sometimes asking them to repeat something (even when I knew what they said, it was a good effect to make them repeat it). For added assurance on important matters, on occasion, I would send a fax to my case manager stating "Per our conversation today, I would like to confirm the following…." I would then fax everyone involved, my doctors, the Medical Director, etc. I kept copies of all the fax confirmation sheets indicating that the faxes had gone through. My HMO had case managers who would act as a liaison between you and the HMO. Having a good reliable contact person is important. I don’t necessarily believe the case manager was my advocate or on my side, but customer service reps are notorious for miscommunication. I thought it was just my HMO, but after reading HMO Hardball, I found it is a tactic to disorient, discourage and confuse an enrollee. There were a few reps at my HMO, however, who were very good and helpful….I got to know each one’s name and if I had to talk to a rep, only wanted to talk to those two. It wasn’t necessary though, once I was assigned a case manager.

The fight against your HMO isn’t easy, but it can be done. The crucial thing to remember is that you should get approval to see an out of network provider (an endometriosis specialist) as if "in network" for a service that isn’t available in network. You will need to prove to them that there are no endometriosis specialists in network who do excision to the level of an endometriosis specialist. This will more than likely be a difficult fight. It takes organization, planning and strategy; as far as emotionally, it can be draining. It’s not easy to hang in there when you’re fighting against a company who’s only interested in the bottom line, but to you, you’re fighting for your life – for a good treatment so you can live life pain free. They don’t care…it’s business, not personal. But to you, it IS personal. It’s important, and you need to hang tough and fight.

Fighting to have the surgery was difficult thing to do, and I cried and worried a lot when it got difficult. But in the end, it only made me stronger and gave me the will to fight. It was worth it, because even now, at 8 weeks post-op, I feel better than I have in years. I know my endo was removed thoroughly, as well as adhesions and retroperitoneal fibrosis, along with the diseased ovary and uterus. I have a better chance of feeling better than any other treatment options, and as time goes on, I am hopeful I will continue to live pain free. I am so grateful for my blessings of good friends who wished me well, and that I had the opportunity to have surgery with the Center for Endometriosis Care. Not too long ago, it seemed like a faraway dream that could never come true, but it did!