Comments | endometriosis: Pondering treatment options

hrafn in endometriosis

Pondering treatment options

Oct 20, 2007 12:36

I met with the GYN at my health clinic last week, to discuss treatment options. Based on multiple ultrasounds and an MRI, it looks like the cysts on my left ovary are endometriomas, so now the question is, what to do. I went in feeling fairly educated, from reading this group and all the various links y'all have posted (plus some I found myself).

( things discussed )

cysts, iud - mirena, laparoscopy - is it necessary?, "what do i do now?", "what works for you?", treatment options, surgery, natural treatment, alternative treatments

Comments 14

halimeister October 20 2007, 19:09:58 UTC

Well, you won't know for sure if it is endo until you have the lap and then once you know what you're dealing with you can consider options. I'm in a similar situation. I'm not taking hormones or Lupron and Chinese medicine has been recommended to me from two ARNPs but my OB/GYN isn't wild about it. I started taking Omega 3 capsules and may look at other supplments. I know a lot of people have talked about diet changes, which are briefly dicussed here.

hrafn October 20 2007, 20:23:21 UTC

Agree on the "won't know for sure until surgery," which is definitely an argument in favor of sooner rather than later. (Plus, my current insurance runs out a month after I graduate.)

I just started taking supplements (an omega 3-6-9 blend, plus evening primrose oil, and some vitamin/mineral stuff), but I also changed my diet somewhat, unrelated to the endo but related to general energy/alertness, so I can't tell if it's the diet or the supplements that have been improving things. I have read up on some of the endo diet things, and wheat is pretty easy for me to eliminate, since it was making me foggy and fatigued anyway :\ (and I hadn't been eating much for years on general principles). Dairy, too, since it gives me bad acne.

The GYN I talked to didn't say much one way or the other about diet or supplements when I mentioned that.

I take it you haven't tried the Chinese medicine yet?

halimeister October 20 2007, 20:39:25 UTC

No, and I'm not sure if I will. A lot of my health issues are GI related so I don't have a lot of endo pain (see this post).

bluesxgirlie October 20 2007, 19:54:47 UTC

another file for the ridiculously inconsistent medical treatment. i'm 25, i was 24 when i was diagnosed and before my surgery my ob/gyn was pushing lupron on me like crazy. he wouldn't even refer me to a pain clinic to try and treat symptoms instead of going on lupron. when i called for the referral he called me back that day himself to try and get me to go on lupron again (that was probably the 4th or 5th time). oh and i'm self pay and the shots run more than a grand a piece supposedly, not counting add back hormone therapy, and the fact we're trying to have a baby! i've since found another doctor who i think i am going to see ( ... )

hrafn October 20 2007, 20:25:36 UTC

I feel incredibly lucky to have gotten things attended to so quickly, but the fact that this manifested as cysts probably helped.

I hope this other doctor you are trying to see is more opening to working with you, instead of just deciding for you what to do.

neonrose5 October 20 2007, 20:58:36 UTC

not to sound snotty or anything, but depo is the word you are looking for & it's the mode of dispensing.. it's an injection.. just there's Depo Lupro & Depo Provera..

Thumbs up for surgery neonrose5 October 20 2007, 21:00:51 UTC

I'd go for the surgery, if ony for Dx purposes.. but with the cysts you say you see, I'd Definately go fer surgery..

Then consider a low dose oral contraceptive, one that stays at the same level at all times, so there's no fluctuation .. I dunno what you've taken & how recently, but some of the newer drugs may be better.. I wish you lick..

Re: Thumbs up for surgery hrafn October 20 2007, 21:07:01 UTC

Thanks. At this point, I've only taken ibuprofen for pain control, and some supplements which may not be doing anything yet - I only started them about a week ago.

happyhat13034 October 21 2007, 15:38:31 UTC

I think it is great you are getting surgery so fast, I waited for years and it was not a good thing in the end and caused my fertility problems. I was on the Depo Provera shot for 6 months consecutively before I got 4 months of fertility meds to try and get pregnant. I don't know if you are trying to get pregnant so thay part dosn't apply to you it is just part of my story relating to why I took the depo in that way. I had my lap, 6 mos. of the Depo and the fertility meds. Right after the lap my doctor wanted me to take these shots called Zoladex, it is used for endo and prostate cancer. It is a pellet about the size of a grain of rice that they inject under the fat in your tummy and it basically puts you into menopause for a while. It was too strong for me and after the first month I told my doctor the side effects (hot flashes and mood swings, insomnia, extreme sweating) werte too much and thats when I got moved to the Depo every month for the remaining 5 months. I did not have nearly as bad side effects on that medicine as ( ... )

greenleetaylor October 21 2007, 23:32:46 UTC

How much trouble are you getting from the cysts? If it's not too troublesome, then maybe surgery right now is not the route to go.
I've been on the lupron and I'm 22. I personally want to have a hysterectomy but they won't do that. Sending your body into a point where you're not cycling (depo does it too) is something that tends to give relief. For me I'm highly sensitive so I can't get relief from just being on the depo - and pregnancy is a crazy fear for me. I was on depo for 4+yrs and I take prenatal vitamins because there's more to offer and each (of the ones I have) have 800mg of calcium. Other than my high sensitivity the depo worked very well for me.
I have migraines and they never caused an issue as to what I was on for medication re: birth control. Actually the depo gave me less intense and fewer migraines.

hrafn October 21 2007, 23:39:48 UTC

I have mild to middling pain during the first couple weeks of my cycle, which I can either ignore, or deal with by taking ibuprofen. Also some minor pain, sometimes, during intercourse. So they're not causing a lot of pain/trouble. The biggest reason I'd rather have surgery than just hormones is that surgery will confirm whether or not it's really endo, and remove them; hormones won't make them go away, only control the pain, and I can do that just fine with ibuprofen.

I'm now at the point where, depending on the answers I get from the GYN about this surgeon she has in mind, I may put it off until I can get surgery from someone who is more experienced with this kind of situation - perhaps her guy will be fine, but I don't know enough about him yet. (Although if - and it's a stretch, I know - these things do turn out to be in any malignant, putting it off too long would be bad, but again, I won't know until they can be biopsied.)

greenleetaylor October 21 2007, 23:42:30 UTC

I'm happy for you that you can control the pain with advil.
your gyn doesn't do any surgeries or anything? Theres always the possibility your endo is microscopic too.
Good luck though!!

hrafn October 21 2007, 23:46:37 UTC

It sounds like she doesn't do surgeries herself - or maybe only does simpler ones? This was the first time I've seen her, so I don't know a whole lot about her. She said specifically that, if I decide on surgery, she wants to schedule me on a Tuesday, because that's when this one guy who is really good with laparoscopy is available, and if he's in charge, then there's less likelihood of the surgery turning into a laparotomy. Unfortunately, I didn't think to ask how much experience he's had with endo, and what kinds of tools he uses (laser or sharp things), etc., so I'm calling her office tomorrow to find out more. There don't seem to be any endo surgery experts in my area (Denver) like there are in other parts of the country :\

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