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Pelvic Pain Support Network

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petuneya profile image
12 Replies

I had no idea that such a forum exists! I feel that I have suffered with chronic pelvic pain most of my adult life. Its there all the time 24/7 I feel that not a day or minute goes by where I am not thinking about it , or crying over, it, or depressed about it.

so, I have not seen an obgyn until very late in life, I know, terrible ! but I do have fibroids causing heavy periods and endometriosis. and she is pushing me to have a hysterectomy?

although I do not want to have children I also terrified of having a surgery that will remove my uterus, and if I do not have to I would rather not!

I am not sure what to do.

thank you

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petuneya profile image
petuneya
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12 Replies
bantam12 profile image
bantam12

If you don't need it and it's causing trouble why worry about getting rid of it ?! I've been begging for a hysterectomy for years but docs won't agree to it ☹️

Yacoub profile image
Yacoub

Sorry for your pain! I had a total hysterectomy so has my daughter and mom. None of us had any problems! If you don't plan to have children and this would end your suffering!?? Don't be afraid! Myself and daughter both (of course) have breast cancer in our family. So taking hormones is not a good option. But a creme that is a compound Rx twice a week presents a very small risk. Google family history and breast cancer. The percentage is actually not as genetically prevalent as most women have been taught. If a Hyst will stop your suffering why not? The only time they won't do it is if your too young, or in my case Dr knew I wanted a second child and said to wait to have it done till statistics have proven risk of SIDS was over. The last period I had, I was on vacation and by the time we had driven home the hospital had to give me 4 units of blood. Super dangerous! Best of luck to you and whatever decision you come to. If you would be more comfortable, get a second opinion! Take care

netbee19 profile image
netbee19

What kind of pain are you in? Are you sure that it's from your fibroids?

petuneya profile image
petuneya in reply tonetbee19

pain in the pelvic area every single day! sharp, almost stabbing pain, and during my period, forget it, I am in bed unable to do anything at all...

swarke22 profile image
swarke22

Please look at this website. ourbodiesourselves.org/book... This may help, I hope so.

swarke22 profile image
swarke22

Please look at this website. integrativewomenshealthinst...

petuneya profile image
petuneya in reply toswarke22

Hi swarke22, I found this article extremely helpful. I actually do have a candida overgrowth problem as well. I have a very limited diet as I have so many food intolrerances there vey little I feel I can eat, I am always extremely bloated I look 9 months pregnant, and I am scared to experiment with foods because of adverse reactoins I had a piece of mozzarella string cheese a month ago and still feeling sick fromit! and cetain foods just make the pain so much worse...

swarke22 profile image
swarke22 in reply topetuneya

Hi,

I’ve started doing the threelac protocol with candisolve. I’m a month into it and already I feel that it is attacking the candidiasis. I will post back on this site in six months time. I used threelac in 2006 and couldn’t do the protocol then because of finances but now I am determined. It did work on several levels but I couldn’t afford to do the seven months but I will do them now and stay on the one dose a day after seven months. I know this has worked before for me. Good luck,

S

strongmouse profile image
strongmouse in reply topetuneya

It is worth trying diet and it may help with some of your symptoms and pain. However, whether that will deal with the endometriosis is another question.

I suggest that you ensure you know what they hope to achieve by doing a hysterectomy and ask what the risks are and what the benefits are.

At the end of the day no surgery is without risk, so be as well informed as possible. Having said that I had a hysterctomy and it does take time to recover from it, but otherwise I went onto have HRT and no major problems. So it can be beneficial but certainly research the alternatives first.

swarke22 profile image
swarke22

I’ve researched and know that Candida causes food allergies etc.

Traz60 profile image
Traz60

Hello petuneya, I'm sorry you're in such pain. Please look into a procedure called Endometrial Ablation, rather than going the route of a hysterectomy. Way too many Drs. perform hysterectomies as their first line of defense, but there's a very good reason women have those female organs, and removing them should always be a last resort! With an Endometrial Ablation 85% of women who suffer intense, painful periods are usually period free after the procedure. I had my EA at the age of (I believe) 42 and never had another period. My lifelong monthly suffering was over. As for the other 15% of women who still have a period, it's usually very light and only lasts a few days. I'm certainly no expert nor a GYN, but I felt compelled to give you an alternative to ask your GYN about. The reason I beg you to try and avoid a hysterectomy is because of the multitude of complications that may arise from having such a complicated operation and because of my own personal experience. In 2015 My uterus prolapsed, so my GYN removed it, leaving all my other female organs in place. Less than 1 year later, the rest of my female organs prolapsed. Had I known that removing my uterus would ultimately lead to everything it held in place eventually prolapsing less than 1 year down the road, I would have never had it removed! The second surgery where the surgeon, a top notch Urogyn, resulted in a lifetime of 24/7 nerve pain, that he will never admit to doing. I'm convinced he cut a nerve near my urethra and now my life is ruined forever! I carry a bottle of ICE between my legs (resulting in horrible frostbite on my inner thighs) even though I make sure the ice is well covered. Bottom line...PLEASE do plenty of research before you allow a total or partial hysterectomy. Many women never have a problem after having a hysterectomy, but way too many do! I realize our situations aren't comparable, except for the hideously painful periods. Please go for a 2nd opinion to a Urogynecologist before making up your mind and ask about the Endometrial Ablation procedure. It's far less invasive and might be the answer to your problem. I can't say for sure. What I do realize now is, all of those female organs serve a larger purpose in women's bodies than just having children. Either way, I wish you the very best in whatever decision you make. Lord knows, I wish I would have been more proactive by researching further before I I consented to a partial, then a complete hysterectomy. You may want to also visit a website called "hystersisters" to educate yourself more. Take care & God bless!

Warm Regards, T RAZ

petuneya profile image
petuneya

Dear Traz60, thank you for sharing your story, so very helpful for me but I am so sorry you suffered so much. I am doing ALOT of research and have read many similar stories to yours and I feel devasted by how lives have been changed forever by what some consider a routine operation for women of a certain age... I think I have decided I will NOT get a hysterectomy for my endo unless one day it is needed as a life saving procedure. but thank you so very much, I am so glad I have found this support group. though now I am still in tremendous pain all the time but I am looking into other options.

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