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Forum Name: Gynecology

Question: Cysts, endometriosis, previous CRAO


 bjc1958 - Fri Jun 17, 2005 1:32 pm

I am 47 years old with a 3 year history of very painful cysts on my left ovary. Recently my ob/gyn told me he also thought I had endometriosis based on symptoms. In 2003 and 2004 I had two central retinal artery occlusions which have left me with only bits of peripheral vision in that eye. The neurologists at the hospital believe the CRAO was caused by a number of factors - migraines, high cholesterol, CREST Syndrome, smoking and the recently added birth control pills (which had been prescribed to stop ovulation). They said I shouldn't ever take hormones again. My ob/gyn now is talking about doing a hysterectomy with removal of both ovaries. I am extremely resistant to this idea because I would not be able to take HRT. I do not want to go through the hell my mother went through during menopause. I would be less resistant to a hysterectomy if the right ovary was left in. My doctor is very opposed to this, saying that it would be incomplete surgery and that the chances of cysts starting up on the other ovary are high. We are at an impasse with each other over this. Frankly, I'd rather not do anything and just wait for menopause but the ob/gyn is concerned I will become addicted to painkillers with all the pain I am having. The most recent cyst in May is gone but I am still having severe pain coming out of that side. My ob/gyn doc thinks it is the endometriosis and probably IBS. This is a nightmare. Does anyone have any ideas for me. I am just so tired of pain.
 Shannon Morgan, CMA - Sat Jun 18, 2005 8:51 am

User avatar Have you had a laparoscopy to diagnose the endometriosis? If not, there is no way to diagnose it 100%. It cannot diagnose based on symptoms alone, it doesn't show in ultrasound, and only very severe cases show on CT or MRI, still not proven a reliable method of diagnosis.

Hysterectomy is a very drastic treatment; endometriosis can be removed while having the laparoscopy, either by laser (burning away) or traditional cutting. It will also be biopsied to rule out any more serious problems.

If it's inoperable and indeed on the ovary, you may choose to have it removed, but it would be your choice as to whether the other is removed.

Seek a second opinion on this; you will need a very skilled OBGYN to have it done.
 bjc1958 - Mon Jun 20, 2005 11:09 am

Thanks for your suggestion. The doctor hasn't even mentioned doing a laparoscopy. I keep waiting for him to mention it, but he doesn't. I asked what the treatment was for endometriosis and he said at my age, the treatment would probably be the same - a hysterectomy. I think he has gotten so stubborn because of the CRAO which he said makes me a surgical risk and he doesn't want to do surgery more than once. Since last week, I have been wondering if we are asking the right questions since the cyst is gone but I am still in pain. Could there be something in there, that the smallest cyst is aggravating it? What could be in the ovary area that having a cyst would set off pain?

As a side note, I am dealing with Kaiser and those doctors tend to stick together. Getting another opinion means just going to another Kaiser clinic. Since all medical work ups are done via comptuer, they all read each other's notes. I have had some experience with doctors not listening to me, not asking the right questions and missing a diagnosis (including the CRAO which I had warning signs for 5 months before). I'm trying not to be bitter and angry but another 5 days has passed and I am still in pain. I've stopped taking the vicoden because I've been on some type of painkiller since May 20 and I believe I have gotten used to them. I have gone back to ibuprofen 800 and it does help just as well for the moment. Frankly, a couple of rum and cokes work just as well for the moment. I'm just so tired and so down.....continual pain just wears you out.

Thanks in advance for any advice.
 Shannon Morgan, CMA - Mon Jun 20, 2005 4:53 pm

User avatar Have you discussed the possible surgery with your opthamologist? Have you sought a second opinion anyway? Why do you think they will "stick together"?

The main causes of ovarian pain are cysts and endometriosis. If it is indeed endometriosis, it can be removed as I stated before; a lap is much less risky and it's shorter in duration than a hysterectomy, a very major surgery. It is done on an outpatient basis, the recovery time is a few days compared to weeks and there is very little pain.

Instead of waiting for your doctor to bring it up, you need to. Patients these days are responsible for their care, too. It is your choice what procedure you have, and whether you lose just the affected ovary or both.
 bjc1958 - Thu Jun 30, 2005 10:14 am

I did write a letter and faxed it to my internal medicine doctor, my opthamologist and my neurologist. I told them the situation and asked them to please give my ob/gyn doc their opinions. And lo and behold, one week later, my ob/gyn has done a complete about face. He called and said he had talked to my internal medicine doctor and he was just going to treat pain symptoms as they appear and that I should never have surgery the rest of my life if I can avoid it and that he didn't even want to do a laparoscopy. Well, isn't that fascinating? Wonder what it was the other doctors said to him and what the heck is in my medical records that his opinion changed so drastically? From hysterectomy to pain control only. He did not volunteer why he had this change of heart (and I'm too scared to ask) but this is what I wanted all along. I am not that far away from menopause and my hope is that natural menopause will take care of most, if not all of the problems.

And just to answer your question about why I think the doctors stick together, mostly it has to do with the way this HMO is run with too many patients and not enough time to read the medical charts of every patient. As with all HMO's, we can't go to specialists without a referral. I think sometimes they see the recommendations of other doctors and don't really listen to what the patient is telling them. (A patient telling you of increased headaches, increased blind spots and terrible dizzy spells should have at least warranted a referral to the opthamologist.) I remember the neurologist sitting on my bed at the hospital after the CRAO and telling me he was sorry that they had not heard what I had been telling them for months and that apparently the doctors had not been asking me the right questions. And he wasn't even the doctor involved in my care. Believe me, he is now. I know I am mistrustful of doctors in general now but I am grateful for doctors like him.

And you are right, I am responsible for my own care. Once again, thank you for your input and suggestion.
 Shannon Morgan, CMA - Thu Jun 30, 2005 10:48 am

User avatar I'm so glad it's a happy ending!!!!!!

It sounds like your internist is a good doc and does listen to you! Stick with him.

Take care and thank you for letting me know :)


Shannon

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