Return of Endometriosis extremely annoyed

I had my partial hysterectomy last year 9-23-11. I have had occasional pain on my left side off and on since the surgery I just assumed it was due to my ovary being left on that side. That was until about 6 weeks ago when the pain moved to the right side and after extensive testing I was informed my endo was back. It is the worst it has been they believe it has wrapped around my kidney vein which is why i'm in more pain then before along with the ovary they left being swollen and inflamed. I go in next Wednesday 8-8-12 to have all the endo removed again and they will be putting me on the pill. I'm so fed up with it I just want them to take the ovary and my cervix to help limit the chance of it coming back but due to my age 24 my doctor is basically refusing. So I guess my question is has anyone had a good experience going on the pill to help control endo returning? I don't want to be going in for surgery every year to control pain. This is seriously affecting my life I'm a single mom of twin boys who are 6 and half the time I cant do thing I want to with them because i'm so worn out or just in to much pain. Sorry so long I just don't have anyone else who knows what i'm going through.

I am sorry you are dealing with what looks like continued endometriosis issues. I know that can be very frustrating!

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Originally Posted by desperatesfan ...after extensive testing I was informed my endo was back. It is the worst it has been they believe it has wrapped around my kidney vein which is why i'm in more pain then before along with the ovary they left being swollen and inflamed.

What kind of testing did you have done? Endometriosis doesn't tend to show up on most imaging tests unless there is an endometrioma or the implants are quite large.

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I go in next Wednesday 8-8-12 to have all the endo removed again and they will be putting me on the pill.

Will you be having surgery with an endometriosis specialist to ensure all of the endometriosis can be located and skillfully excised? If any endometriosis is not removed you can continue to have endometriosis issues.

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I'm so fed up with it I just want them to take the ovary and my cervix to help limit the chance of it coming back but due to my age 24 my doctor is basically refusing.

Well, here is the deal as far as the cervix. Removing it won't guarantee no more endometriosis issues. It is only a theory that endometriosis begins as endometrial cells. In fact, normal endometrium does not produce estrogen, but endometriosis does. Additionally, men using estrogen therapy for cancer concerns have been diagnosed with endometriosis and they have no endometrium. If we knew that endometriosis absolutely began as endometrial cells, then it could make sense to definitely remove it all. But we don't. You and your doctor would need to consider the typical risks of a trachelectomy (removal of the cervix) to determine if that procedure is right for you. Have you had a second opinion about it? Do you have pain and symptoms related to the cervix? Why was the cervix left when you had your hysterectomy? All of those answers will play apart in whether or not you should have your cervix removed.

As far as the ovary, again, no ovaries does not equal no endometriosis. As I mentioned, endometriosis can create its own estrogen. Also, the younger we are the more critical estrogen is for our overall health. If you do not have adequate estrogen at your age, you could suffer long term health consequences. HRT can be very complex and may not adequately provide you with the hormones you need. For one, the doses of estrogen as part of HRT are lower than what our bodies make normally. At your age, you likely need the higher levels of estrogen for basic health. Any ERT can fuel any remaining endometriosis so you are back to square one.

The key for treating endometriosis is not removing our body parts. Instead, it is the skillful recognition and removal of the actual implants. In my case, I had excision surgery with a specialist about seven years post hysterectomy. Since then, I am endometriosis pain and symptom free, even with both ovaries functioning. As I was young, it was critical for me to keep my ovaries and my own hormones.

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So I guess my question is has anyone had a good experience going on the pill to help control endo returning?

Often, it is not so much that endometriosis returns, but rather that some was not remove and that is what continues to cause issues.

As far as bcp, I had used it for years prior to my diagnosis and my doctor feels it may have helped keep my endo in check enough to allow me to have my two boys. But when I was diagnosed while on bcp, I had stage IV endometriosis so it obviously didn't stop endometriosis. My doctor and I do believe there was a God factor involved as far as my sons, and not that they are here only as a result of having used bcp.

I never used bcp post hysterectomy though it was suggested for PMS issues. It is a treatment option with the goal of trying to regulate the amount of hormones in order to control the endometriosis. It definitely is not a cure but could be helpful. It may be worth a try but I can't promise it will be effective.

Have you had a second opinion from a knowledgeable doctor other than your OB/GYN?

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I don't want to be going in for surgery every year to control pain.

If you are requiring repeated surgeries, you are not seeing the right surgeon. If I had only had surgery with my local OB/GYN, I would have required repeat surgeries. However, he and I both agreed that was not wise so I suffered until I was ready to see the specialist. As I mentioned, since that surgery I am endo pain and symptom free.

I know seeing a specialist can be out of reach for many--it took planning for me to be able to do it--but there are some other options you could consider. For instance, surgery with a gynecological oncologist or a skilled reproductive endocrinologist could be more successful than with a general OB/GYN. There are some stickies at the top of this forum with more information about finding a doctor.

My truly goes out to you as I know this can be rough. We don't have a hysterectomy in our 20's for the fun of it and we sure don't have it planning on future surgeries.

I wish you all the best and hope you can find a successful treatment plan for you!

My doctor does specialize with endometriosis and I have always heard great success stories from others. When my hysterectomy was performed last year they found Adenomyosis inside my uterus along with endometriosis inside my abdomen. So I do believe the hysterectomy was the best thing as it is the only way to be rid of it when menopause is nowhere near being close. I lost my right ovary because the endo was so bad it made the ovary attach to my uterus it couldn't be saved. I had a ct scan done because they thought my appendix was the cause of the pain that's when they saw a large growth by my kidney and with my history of endo they are about 95% sure that's what it is. I also have seen 2 other doctors during these 6 years of pain and they all agreed with the treatment options which I underwent before finally having the hysterectomy last year. I'm just praying there isn't something more going on and this is the last surgery for me.

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Originally Posted by desperatesfan I had my partial hysterectomy last year 9-23-11. I have had occasional pain on my left side off and on since the surgery I just assumed it was due to my ovary being left on that side. That was until about 6 weeks ago when the pain moved to the right side and after extensive testing I was informed my endo was back. It is the worst it has been they believe it has wrapped around my kidney vein which is why i'm in more pain then before along with the ovary they left being swollen and inflamed. I go in next Wednesday 8-8-12 to have all the endo removed again and they will be putting me on the pill. I'm so fed up with it I just want them to take the ovary and my cervix to help limit the chance of it coming back but due to my age 24 my doctor is basically refusing. So I guess my question is has anyone had a good experience going on the pill to help control endo returning? I don't want to be going in for surgery every year to control pain. This is seriously affecting my life I'm a single mom of twin boys who are 6 and half the time I cant do thing I want to with them because i'm so worn out or just in to much pain. Sorry so long I just don't have anyone else who knows what i'm going through.

I'm so sorry to hear that..I have no advice but just wanna let u know I feel your pain.

I had my uterus/left ovary removed July 2011, endo symptoms returned 6 months later. Im 3 weeks post-op attempt to remove it. I chose DaVinci machine for it's optimal 3D eye vision in order to make sure they found it all and removed ALL this **** evil!

Unfortunately it has failed me
Not only am I still in pain (where my old ovary used to be) but also have new pain up near my diaphragm and back to getting seizures!!!!!

I am angry, honkerblonked, tired and hopeless. I had the surgery at this time in hopes to be healthy, strong and ready for the kids back to school.

I too am single mom w two small kids ages 3 and 5. My kids no longer prefer to be w me. They long for the parent that does activities with them, their dad! I am alone, have no more friends, always on the couch or in bed. All I do for them is pop chicken nuggets as meals and a DVD for entertainment.

My surgeon offered the same thing at my follow up, birth control and lupron. I just don't feel right about it. I took Letrazole prior to this surgery (suggested by other gyn) for 2 months and it didn't help me.

I really feel your pain. Keep us posted..

Diana

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Originally Posted by dianar I chose DaVinci machine for it's optimal 3D eye vision in order to make sure they found it all and removed ALL this **** evil! Unfortunately it has failed me

The da Vinci robot is only as good as the surgeon directing it. The magnification is wonderful, but you still have to have a surgeon who knows where to look, recognizes the various appearances, and knows how to skillfully remove what he does find.

in there, both of you!

Thanks Weiser...I cringed when he said he 'burned' and 'scraped' what he could find!!! Oh my gosh so it definitely wasn't excised..

I'm going to see if I can wait 3 months to heal, then I'm headed off to the "specialist"...but even that doesn't give me much hope since there is no guarantee fix. I still have/must take my chances....

Sorry to be such a downer it's just that my world is literally consumed w endo symptoms.

Thanks for the support.
Diana

Thank you both for your support it's good to know other people who have been through this.

My two cents about the birth control portion of your post:

It may or may not have the effect you desire. For me, I have been on continuous b/c since my diagnosis and surgery last year and all it has done is slow the progression.

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Originally Posted by krobin02 For me, I have been on continuous b/c since my diagnosis and surgery last year and all it has done is slow the progression.

That is about all the pill will do for anyone. It is not a cure, but it could keep endometriosis in check so to speak.

Here is an article on the topic written by a specialist that might be helpful for anyone considering this plan: http://www.centerforendo.com/articles/bcp.htm

I totally can empathize with you. I also have(had?) endo for years with hysterectomy for it. I don't know how successful it was. I know how frustrating it is because I am going through more of this again. And for me, the most frustrating right now is that I moved and have to get new docs!! A total bummer! I wish I had seen a specialist prior to the hyst because all the docs are scared of having possible adhesions from going back in. I don't think people understand how consuming this can be. It is just such a terrible disease and so darn hard to get control of.