Adenomyosis - success stories/advice?

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Originally Posted by tnt07 I stay far, far away from the Hers foundation.

Why is that?

Thanks.

Why is that, tnt07? I am feeling so overwhelmed right now, and looking to any reasonable resource available before making a decision with irreversible results.

Are there any good unbiased counseling options available?

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Originally Posted by Depot Hello all, I was recently diagnosed with adenomyosis and a polyp after an ultrasound to explain heavy, frequent periods. The ob/gyn is removing the polyp & says hysterectomy is the only cure for adenomyosis, but she seems reluctant to do a hyst. because of my age (40) and the fact that I haven't has children. My husband and I are not planning a family and I am inclined to proceed (and keep ovaries) since I am so physically miserable. Any other women with adenomyosis have any stories to share? I have tried progesterone, etc but am really leaning towards a hyst. Also - did any of you with adenomyosis have extra weight just in the abdomen? It looks like I am pregnant! Thanks!!

Yes! I was recently told that it appears as though I have adenomyosis as well..I had never heard of it before..but my dr had me go for a transvaginal sonogram and she said it looked as though it was adenomyosis. I had a nova sure ablation abt 2 years ago and that did not stop the heavy bleeding- I also tried depo provera for 6 months and still had bleeding/spotting for 3 months straight. I finally decided to get a hysterectomy because I am tired of always bleeding/spotting/cramping. I am trying the davinci hysterectomy but dr is unsure if he will have to switch to incision if he finds too much scar tissue from a previous surgery..said he won't know until he gets in there. I am scheduled for 11/22/13. I am hoping and praying for a better quality of life. This website has been a blessing! Oh and yes- it looks like I am 4-5 months pregnant- not sure if that is my uterus or not but it wld be great if after the surgery, my stomach was smaller! Lol!! Hope this helped!

[quote=TRU99;4215742]Why is that, tnt07? I am feeling so overwhelmed right now, and looking to any reasonable resource available before making a decision with irreversible results.[/QUOTE
I too stumbled on that site. I would love to know about the advice you received and about the decision you made.

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Originally Posted by Omgwhathaveidon [/QUOTE I too stumbled on that site. I would love to know about the advice you received and about the decision you made.

The person I spoke with at the HERS Foundation scheduled an appointment for me to speak with one of their counselors yesterday, but nobody every called. I have looked at their Facebook page, and there are plenty of posts as to why hysterectomies should be avoided, and also information about issues with endometrial ablation. So, what else is there to help someone like me?

I do not want to take synthetic hormones to put me into false menopause, in the hope that it might stop the bleeding and pain. The side effects from these hormones are horrible, some even irreversible. They are meant to be taken short-term, so once you discontinue use, the problems come back.

Being in this situation really sucks, but I keep telling myself that there are so many people in this world going through much worse. I can hardly whine and feel sorry for myself when there are small children going through chemo/radiation, and battling for their lives.

The particular web site being discussed is an anti-hysterectomy whose goal is to convince women that no hysterectomy is necessary, except possibly in the case of cancer. That is the belief of the founder and followers of the website. Thus, information presented will paint the entire hysterectomy picture is a negative manner. The persons involved with the site feel they are doing a service for women based on their opinion about hysterectomies.

When you find information on any website, in a book, or at doctor's office that scares you, do some research. Look it up yourself to determine if the information is legitimate or if is being used in a biased manner. Take a look at the studies presented and see if you agree with the conclusions drawn. Information can be very biased and stats are not black and white. Data can be presented in a way that is completely inaccurate. Stats can be calculated in such a way as to cause the results to indicate a predetermined result. When sharing stats and/or facts, pertinent information that would refute the statements made regarding them can be left out. Emotions can play a role as well.

HysterSisters.com is neither pro- nor anti-hysterectomy. We try to present accurate information using reputable resources. Our goal is to educate women so they make informed decisions for themselves. If women decide a hysterectomy is right for them for whatever reason, we help support them through the process. We want them to have the resources they need for the most successful recovery. If they decide there is a less invasive option for them, we rejoice with them and wish them every success. If they share their success story with us, we post in a special sub-forum: Options and Alternatives Success Stories.

No woman should rush into a hysterectomy. It is a major surgery that can come with major implications. There are often less invasive treatment options that should be considered first. That is one reason we here at HysterSisters.com recommend all women seek a second opinion before making any final decisions. No matter how much you love your local OB/GYN, you owe it to yourself to get a second opinion to be sure this surgery is right for you. We feel so strongly about second opinions that a second website was created to discuss the need for them: Give Me A Second.

No woman should be scared into having or not having a hysterectomy. There are certain conditions for which a hysterectomy is literally a life saving measure, but in general woman have time to consider their options to determine what is best for them.

Additionally, no woman should go into OR unless she is certain the procedure is right for her. Conversely, no woman should avoid OR because the goal of one group is to eliminate the choice of hysterectomy for all women with benign conditions.

Each of you should discuss your concerns with your entire medical team. Talk to your gynecologist and your family practitioner. If you have other specialists because of other health conditions, talk to them as well since a hysterectomy could impact those other health issues. Then, seek a second opinion from someone outside your medical team. You could ask family, friends, neighbors, and co-workers for the names of doctors. You could get referrals from your current doctors. You can also check www.suggestadoctor.com.

Only you and your medical team can make medical decisions for you. But even then, keep in mind that physicians can also have a wide different of opinions based on their education, training, and experience. Thus, you have to find a medical team that you trust and who can provide reputable information to back up any suggested treatment suggestions. Speaking to an unbiased counselor can be beneficial as well. Again, your current medical team may be able to give you a referral.

Weiser explained it well. Hers seems to be anti hyster for any reason. When I first stumbled upon that site, it scared the crap out of me. I'm glad I sat down and spoke to my doctor, as well as other people who had been through hysterectomies. There are risks, as there are with any surgery. But I think that site blows them out of proportion, and causes a lot of unnecessary fear.