Would you have a hysterectomy?

[4Kids]

My OB/GYN thinks it may be time for a hysterectomy.

the PCOS is causing me to have heavy bleeding. My ferritin was 8 in November, 7 in January and is now 10 after taking 4 doses a day for about 10 days and then 1 dose and a prenatal vitamin. I had been taking single and double doses since NOvember, then I found out it went down so did the 4 doses around Easter. I just can't catch up. They are considering sending me for IV iron treatments, which I would really like.

I have noticed several people noticing that their Sjogren's started after their hysterectomy. Mine is in really good shape and I am afraid it will flare after. I imagine they would leave me an ovary or something for hormones.

I would appreciate hearing your advice or stories. I am really unsure and leaning towards no, cause I never want to feel like I did when it came on so terribly strong.

Thanks in advance.

Jackie

[anita]

You need to do the IV iron (Ferrlecit), IMO.  Your levels certainly warrant it, so insurance should pay for it...and it would make you feel better. It takes about one hour and can be done once a week, once ever other week, once a month...whatever your doctor thinks is best.  Anyway, it would be a solution without surgery. 

And yes, surgery can cause a flare.

I am now post-menopause, but get ferrlecit for my iron deficiency anemia (caused by the Sjogren's itself).  I tried iron supplements with no luck...could not tolerate them and levels did not increase or stay in range.

[DesignerS]

Just my opinion....I would not get a hysterectomy unless my life depended on it! My dr did it to me and looking back, my only problem was some prolapsing, big deal. I would give anything to have my parts back and my hormones. No ovaries were taken but they dont last long after surgery.

Designer

[Joe S.]

I do not think it is possible in my case.

[4Kids]

lol Joe.

Thank you for your opinions. My first response was no and I am sure that is right. I am bleeding funny, like sometimes when I have my period I lift things and it bleeds heavier or I get a gush. Also it almost clears up and then comes back...  which makes me nervous. The Dr did say it wasn't functioning properly but I was still hopeful we could clear it up with other methods.

Interestingly when my iron is better, so is the gush upon exertion thing.  I consider the 10 better.

I would love it if they refer me for the IV iron. We don't get to pick (in Canada) but I will be straight out asking. Parenting 4 very active (one almost hyper active) kids between 2-9 is almost more than I can handle but I am getting better and better.

Honestly, right now, I am a no.  I just want to make a good decision.

[stephL]

Hi Jackie, Heavy periods are fairly common with PCOS, but I thought the treatment for it was a birth control pill? I can't see how the surgery could be justified unless there is another condition in play. My gyn once recommended taking advil several times a day for heavy periods. Ibuprophen reduces blood flow to the uterine artery by approximately 30%. I know that's not a complete solution, but it helps. I had to take a prescription iron tablet because the over the counter iron supplements gave me a stomach ache.  At any rate, for any major surgery, I would get a second opinion. Do you see an endocrinologist for PCOS? Celiac Disease can cause anemia. You might wanna see a GI doc to be evaluated. 

[irish]

When I was 46 I had a total hysterectomy(also cervix) and ovaries/tubes removed and I never regretted it. I had had heavy bleeding since I got my period at the age of 10 years.

I struggled for years and was almost incapacitated at times due to my heavy flow. I had a D & C once and that helped a little bit but not like I thought it would.

I had all my autoimmune stuff since around age 20 and at 46 still wasn't diagosed. I know that I did quite well after my surgery which ended up being a long one with the doc needing to (remove from abdomen and replace) check all my colon for tumors. I had a tumor on my appendix so that was removed also.

I have no doubt that you will probably have some flare of some type, but you know what? Sometimes I think that when we know what is wrong it is so much easier to have a flare. Self fullfilling prophecy sometimes or something. All I know is that the first 40 years of my life I felt like crap and it came and went but never left. I never associated it with any other health issues at the time so who kne.

All I know is the hysterectomy was the best thing I ever did. I had both ovaries removed. Doc was going to leave one but one was gone and the other was shriveling up due to menopause. Now I am glad that they were both taken cause I don't have to worry about ovarian cancer. My cervix is gone and don't have to worry about cervical cancer. My doc started me on Premarin .0625 the day after surgery and I can't say that I ever had any menopausal issues that were of any consequence. I quit the hormones when I was about 60 years old.

I can believe that the sjogrens was affected by the hormonal shift in our body, but in women everything is affected by hormonal shifts in our body.  Sometimes just taking it a little more easy that time of the month is worth it. Good luck in making your decision.

Oh, by the way, when the surgeon got inside he found an artery feeding my uterus that was as big as his thumb. No wonder you bled so much he said --- this explains all the bleeding with childbirth. Doc was glad that I had chosen the surgery as it was a serious thing. He told me he stitched and stitched and made sure that that artery would not bleed again. Irish

[Belsey1]

My Sjogrens was diagnosed less than one year after my hysterectomy.  I feel I had it long before then, but the symptoms just became more prevalent or I pursued a cause more diligently after the surgery due to debilitating fatigue and dry mouth I tried to blame on the anesthesia.

I first had an endometrial ablation to try to stop the bleeding.  However, cells sent to pathology showed signs of one of the "plasias" ....sorry brain fog.  Anyway they were precancerous.  Therefore a total hysterectomy was warranted.  I have absolutely no regrets about the hysterectomy.  I had a wonderful doctor who is "surgery shy" and only performs it if absolutely necessary.  He is an oncologist gynecologist.  One think he does not recommend and I would NEVER do is use hormone replacement therapy.  No way!!!

The heavy bleeding needs to be addressed as to what is causing it before a decision is made.  It may be the case, as Irish shared, of an enlarged artery feeding the uterus.

Yes, I do believe my hysterectomy led me to be diagnosed with Sjogrens and even possibly worsened my symptoms.  I do not think for a minute it caused the Sjogrens.  I just think prior to then I had been blaming way too much stuff on my Fibro.

Good luck with your decision, just try to compile all the info you can prior to making that decision.

[SueAnn]

I don't have PCOS but I did have super heavy bleeding and I also needed a biopsy so my gyno recommended a D&C and a Novasure Ablasion.  I wish I would have know about this sooner!  I barely have a period anymore if I even have one.  It was the best thing I have even done.

I had this on a Friday and was back to work on Monday, in fact the proceedure was less painful than my periods had been.


SueAnn

[gurs]

NO..NO...NO....please dont!!!! As I sit here sicker than a dog..crying, wishing I never had a hysterectomy almost 6 years ago.
I had endometriosis and a few cysts, adenmyosis? whatever, it wasnt cancer or life threatening. My male doc said I will feel so much
better, just use a little natural hormones after and you will feel great!   WRONG! I was ok for 8 months, then all heck broke loose..almost overnight. Had to go to the ER, thought I was having a stroke, SJogrens got 100% worse..think your dry now? just wait. Tried several kinds of hormones and all make me feel sicker. Some of us AI people just cant tolerate them. Been to at least 15 different doctors dealing with hormones etc. I have no hair, skin is like an 80 year old, face too (not kidding) teeth all falling apart..just found out I have osteoporisis on tuesday. I also cant take alot of the meds I was on before..having allergic reactions to everything. Have severe gastroparesis, stomach pain, neuropathy, migraines,more yeast problems all over,  Developed POTS..have anxiety...depression, severe mood swings and allergies that I never had before..ughhhhh..my list goes on. They say even if you keep your ovaries, the ovaries will only work for so long after, then you will be in menopause..Instant menopause is not like a normal menopause either. Your body goes into a shock from lack of hormones.
My sjogrens and lupus causing so many problems now. Docs arent sure what to do with me now. Its just been a nightmare. But, not giving up.
Im not saying all this will happen to you..but, I myself, would not do it unless I had life threatening cancer.

Good luck with whatever you decide....I like SueAnn's suggestion? If it comes down to it, I would at least try and save the
ovaries.

Gursie

[4Kids]

Thank you for all your experiences, from the bottom of my heart.

Yes I am on the wait list for an ablation. They tried once already but the room was full of people and I had a traumatic birth experience and I couldn't relax. They gave me twice the local, twice the whatever stuff they give you by iv to make you relax and be awake but not care and it didn't affect me at all.

So now they are waiting to get me into the OR or give me an epiderral. I am fine with my dr alone but a room of like 10 people and me sitting with my legs apart...  just cannot do it.  They may knock me out... I hope so.

Lol.

HOw would you find out if you have a big blood vessel in your uterus?  Something isn't right in there, I know it isn't. My biopsy came out normal that was done in Sept. Had a cervical biopsy sent yesterday just to check.

[Daisy1234]

Dear 4Kids:

Just know that you must make the best decision for YOU.  Always, take into consideration that you may have many years to live on this earth and the best gift a mother can give to her children is to take very good care of herself.  I know that you love your children very much so please make sure to always be very kind to their mother.

The only advice I have is to do what you know is best for your health in the near, medium and long term.   It doesn't mean that the best decision is the easiest to take, that's usually not the case unfortunately.

Just know, that I am surrounding you right now with gentle and caring hugs,

Daisy

[Gayle]

I had emergency hysterectomy when I was 21. Not due (at least as far as I know) to SJS. I had had several miscarriages, could sneeze and blow a clot the size of my fist. Was basically bleeding to death - one clot at a time. Never had any problems at the time and still glad I am not dealing with all these issues. Good luck with what ever your decision is.

[Iris]

I didn't have heavy bleeding but it would last 2 to 3 weeks.. I had a partial hysterectomy at 30 and it was the best thing I ever did..  I still have my ovaries and never had any problems with hormones.. I'm sure I already had sjogren's since I had very dry eyes and joint pain back then but it didn't get worse for years afterwards so I don't think it had any affect on it..

Everyone is different.. Some may get worse after a hysterectomy and some won't.. But with sjogren's you may get worse after any illness or surgery.. So if you need a hysterectomy don't let having sjogren's stop you..

[WildThing]

I do not think it is possible in my case.

You sure Joe?  You did mention a while back that you wouldn;t wear a miniskirt in cold weather.



But seriously no I would never ever ever get a hysterectomy unless it was a matter of life or death.  Mainly because I have a connective tissue disorder and the operation would probably kill me anyway bbut even so I would never have one.  I am assuming you have tried different methods of birth control to help with the heavy bleeding?  It's your body though, it's your choice.  Whatever you decide I'll support you, I'm sure we all will.