Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: 4Kids on April 24, 2012, 06:17:24 PM

Title: Would you have a hysterectomy?
Post by: 4Kids on April 24, 2012, 06:17:24 PM
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.

Title: Re: Would you have a hysterectomy?
Post by: anita on April 24, 2012, 06:41:48 PM
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.
Title: Re: Would you have a hysterectomy?
Post by: DesignerS on April 24, 2012, 07:34:22 PM
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.

Title: Re: Would you have a hysterectomy?
Post by: Joe S. on April 24, 2012, 07:53:30 PM
:) I do not think it is possible in my case. :)
Title: Re: Would you have a hysterectomy?
Post by: 4Kids on April 24, 2012, 07:58:54 PM
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.
Title: Re: Would you have a hysterectomy?
Post by: stephL on April 24, 2012, 08:07:26 PM
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. 
Title: Re: Would you have a hysterectomy?
Post by: irish on April 24, 2012, 09:19:21 PM
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
Title: Re: Would you have a hysterectomy?
Post by: Belsey1 on April 24, 2012, 11:33:21 PM
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.
Title: Re: Would you have a hysterectomy?
Post by: SueAnn on April 25, 2012, 01:35:58 AM
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.

Title: Re: Would you have a hysterectomy?
Post by: gurs on April 25, 2012, 04:36:13 AM
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 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

Title: Re: Would you have a hysterectomy?
Post by: 4Kids on April 25, 2012, 06:24:52 AM
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.


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.
Title: Re: Would you have a hysterectomy?
Post by: Daisy1234 on April 25, 2012, 07:09:31 AM
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,

Title: Re: Would you have a hysterectomy?
Post by: Gayle on April 25, 2012, 07:11:44 AM
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.
Title: Re: Would you have a hysterectomy?
Post by: Iris on April 25, 2012, 08:07:48 AM
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..
Title: Re: Would you have a hysterectomy?
Post by: WildThing on April 25, 2012, 08:20:37 AM
:) 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.
Title: Re: Would you have a hysterectomy?
Post by: iraisin on April 25, 2012, 12:11:50 PM
look into uteran ablation. I had it done, was able to keep the hormones from ovaries. I had mine done by Novasure. It's been awesome. My monthly pain and even PMS was gone for over a year. My gyno kept one strip of the endometrium in place - which just last month started shedding - didn't this month though. When it did last month, I did have a bit of PMS (minor in comparison) and some cramping (again, minor). It has changed my life and I didn't have to go on hormone therapy.

My Sjogren's symptoms are worsening - but I can't relate that to the ablation treatment. Good luck to you. BTW, Novasure has a website - check it out and talk to your doctor about it. Good luck
Title: Re: Would you have a hysterectomy?
Post by: slccom on April 25, 2012, 12:30:52 PM
If you do have the hysterectomy, I was told by a friend to religiously adhere to the weight lifting limitations for the full duration of the time they tell you. She didn't, and has paid for the rest of her life for that.

I hope you soon feel better!
Title: Re: Would you have a hysterectomy?
Post by: SueAnn on April 25, 2012, 01:25:28 PM
When I had the D&C and Ablasion they put me under, I wouldn't do it any other way.

Title: Re: Would you have a hysterectomy?
Post by: Katybarstool on April 25, 2012, 01:43:17 PM
I had no choice with the hysterectomy. I had had two endometrial ablations previously for very heavy bleeding. Then collapsed in agony. It seems the second abltation had selaed my tubes, and the next period time causedpain like in an ectopic pregnancy. Had I not had the hysterectomy, my life would have been in danger. Apparently, ablations are contra-indicated for women who have previously had their tubes tied.

I know I had Sjogren's before the surgery, but it definitely became more prominent afterwards. How much was due to the psycholoigcal trauma, I really do not know.

Good luck with whatever you decide.

Title: Re: Would you have a hysterectomy?
Post by: 4Kids on April 25, 2012, 01:53:06 PM
Novasure Ablation was what they attempted to do, but I need to be put under as the sedation methods just didn't help and I kept leaping away from the dr on the table.

I will definitely try that first, hopefully I will get in soon.

No tied tubes here. I wouldn't allow it! lol.

Title: Re: Would you have a hysterectomy?
Post by: cargillwitch on April 25, 2012, 03:27:07 PM
I am a nurse working exclusively with women- PLEASE keep your uterus and ovaries!( the uterine ablation works REALLY well for many many women with bleeding issues!)
It is changing but for several generations getting rid of women's reproductive organs was thought of as routine
 " You aren't having anymore children are you? well we'll just nip them out and your life will be smooth sailing" it sounded like they were doing you a favour!

Everything in our bodies has a purpose. the uterus  helps to suspend and support the bladder and other internal structures- take it out and almost inevitably bladder and other prolapses follow. Requiring more surgery.
The ovaries play a key role in hormone production and regulation of processes within the body( and yes secretions from exocrine glands does appear to be one of them!) long after menopause. We like to think we can replace them with man-made or animal/plant based hormones but each women's hormones are unique.Getting your perfect mix is like trying to find a needle in an alternate universe.

 I often wondered if we suggested to men having penile, testicular or prostate problems that we just'"take them out for them". If they would begin to view female organs with the same reverence they do their own . Maybe they would then work to preserve  them with the same ferocity!
Title: Re: Would you have a hysterectomy?
Post by: 4Kids on April 25, 2012, 03:51:47 PM
I called and i am on the wait list for another one to four months.

I have bladder problems already. My SIL is of the opinion you should get rid if your cervix, uterus, ovaries.and breasts. I guess if it is the last resort for me I will do it but I wish or hope rather I don't have to make that call.

Part of me just wants to have another baby and nurse some more... I love that.
Title: Re: Would you have a hysterectomy?
Post by: iraisin on April 25, 2012, 04:38:34 PM
oh yea, I was out like a light. I cry at needles - there was no way I could handle that with a local. And too, I couldn't handle 10 people working around my hoochie while I'm awake either. I'm w/you there. WoW! you really bring back some unpleasant memories in regard to bleeding. I feel for you, and I really, really hope this works for you.
Title: Re: Would you have a hysterectomy?
Post by: Belsey1 on April 25, 2012, 11:09:22 PM
I was definitely put to sleep for my ablation.  Any other way was never an option or I would have opted for it no matter how many people in the room.  I have an unrealistic fear of being put to sleep.  My doctor thought I was going to have to have psychiatric evaluation and treatment prior to my hysterectomy.  However, I got out my prayer book and prayed for hours every night for about 10-12 days prior to the surgery.  On the 3rd day before my surgery I awoke to a peace I could have never believed possible and knew I would be ok.

Back to the the recovery room, the nurse said something about standing on my head.  When I questioned her, she said Honey you were turned in more directions than you would ever want to know about.  Guess that is why it was better for me to be asleep.

I wish you luck and like many have advised you, make the best decision for you...and if you are one who prays.......pray, pray, pray.
Title: Re: Would you have a hysterectomy?
Post by: 4Kids on April 27, 2012, 06:20:21 AM
One more question:

TMI Warning.  Irish and Cargillwitch, if you notice this, I am curious of your response.

I get clots and then I get gushes. This is how I tend to bleed. It is like something did not heal right from my 4th child's c-section. I bled for 4 months after he was born. I had a LOT going on and very little help. None of my kids sleep well, I rarely sleep through the night. So the lochia lasted 4 months and my period started where it left off after that. I was nursing so not fair.

So now I do not really trickle blood, I usually bleed in gushes. About one pad's worth. Yesterday was 6 pads only (not so bad, day 2 is my heaviest day) and today I had one gush after laying down all night. That is reasonable I know but does anyone have any ideas about the clots (sorry if gross, but they are smaller than quarter size mostly) and the gushes.  I have not told the dr that part and probably should. He doesn't ask millions of questions and I don't always know what to offer.

Thanks for listening...
Title: Re: Would you have a hysterectomy?
Post by: Cindy on April 27, 2012, 06:47:57 AM
4kids I know it may not help but have you thought about a second opinion? Maybe another doctor will give you more options. Not all the doctors want to perform a hysterectomy in young people like us, unless is extremely necessary,
Title: Re: Would you have a hysterectomy?
Post by: cargillwitch on April 27, 2012, 08:57:57 AM
you should have had a break from periods with lots of night nursing-too bad!

I also nursed all four of my children( in terms of years for each one- I am a La Leche League Leader as well as nurse and doula)).

But on to the healing after cesarean- sounds like it was imperfect at best- should have been looked at more closely at the time.

Clots are usually a sign of either fibroids  ( blood pools around them then clots somewhat before your  movement usually forces them out) or too much progesterone production. I think I recall reading you did have polysistic ovarian syndrome so this would mesh with that.
6 pads in a day is a lot .

Have you thought of working to balance out your hormones with a naturopath? Most mainstream docs treat just symptoms and rarely look at the larger picture that the bleeding is being prompted by something hormonal that needs to be addressed.
Evening primrose oil, flaxseed oil,black currant all have been used for generations for leveling out progesterone over- production that leads to the endometrium " overbuilding" itself and causing heavy bleeding. If you are so inclined researching these and other dietary measures might be very useful and non-invasive.
Title: Re: Would you have a hysterectomy?
Post by: 4Kids on April 27, 2012, 09:23:53 AM
I.wish we had help w the naturopathic stuff. It costs so much, that is why I haven't went.

I checked, yes I have all symptoms of too low progesterone. I am on my fourth pad and it is day three today, and 10am.

Clearly not time for hysterectomy but time to get to the bottom.of it. I may have to dip.into savings.and try the naturopath.
 And figure it how much.and hopefully something other than exercising  I just do not have the oomph. I try but it is hard.

Eta I thought pcos meant I have too low progesterone?
Title: Re: Would you have a hysterectomy?
Post by: irish on April 27, 2012, 01:52:34 PM
I have lost track of all the hormonal stuff as I am older and 22 years past the hysterectomy. I do know that it sounds like you are bleeding a lot. I always had to wear 3 pads when I worked just to prevent a real bad accident. I wore 3 at night also plus a bath towel on the bed.

I know what you mean by the gushes and I did that most of my life. Not always real bad but enough to make my life miserable. I am going to be quite graphic so the men can leave now!!!lol

One of my OB?GYNs told me that if women would be standing up with their legs apart the blood would drain more freely from their uterus and the clots wouldn't be as frequent. Well, that sounds well and good from someone who doesn' actually experience a period.

I still say that when you are passing a lot of clots you plus bleeding in between you are bleeding too much. Sounds like you need a good work up or second opinion just to sort out all the information that you have been given from us and from the doctors.

It is very possible that you could have a little area in your uterus that has not healed properly eith where the internal incision was or the area where the placenta was. Absolutely anything is possible in a woman after she has a baby. We have hormones and we have interesting body parts that are very specialized that need very specialized attention. I wish you well in your search.

Just out of curiosity does the act of nursing make any difference in your bleeding. Maybe this isn't so much a uterus issue as a hormonal issue related to the other glands in the body. Thyroid, etc. If nothing else maybe an endocrinologist would have a better grasp of this situation. Good luck. Irish ;D
Title: Re: Would you have a hysterectomy?
Post by: 4Kids on April 27, 2012, 02:00:10 PM
Actually, I think I have noted more clots/gushes since stopping nursing.  I wish I paid more attention.  I did have heavy periods while nursing, since the birth of my second daughter in 2007.

Thank you for all your insight.

I phoned my Gramma:  she had the clots and gushes, and a hysterectomy at 43. Hers were worse than mine are. I do lose a lot of blood. 2x the iron supplements these heavy days I guess.  Same thing, I guess but worse. She was very run down and nothing could catch her up. The hysterectomy was worth it to her and "perked" her up. No problems since, other than severe bladder trouble.  :-\

I agree something didn't heal right. I had a hernia on my incision from chasing my dd2 out on the street at 36 weeks. They found it and fixed it during my son's c-section. Perhaps that was it? I better get it all checked out further. I LOVE my ob/gyn but.  I have also had 4 c-sections. So 4 c-sections and a gall bladder surgery in slightly less than 7 years.  Kids are so WORTH it.

All this has really proven I guess we need some further investigation and I had better organize all these thoughts etc before I go. I tend to get so worked up during gyn appts I forget my name  :-[.
Title: Re: Would you have a hysterectomy?
Post by: Nancy60 on April 27, 2012, 07:05:49 PM
I had a Novasure ablation in 2006 because of clots, bleeding/gushing alot like what you describe.  I haven't had any pregnancies or children.  I had one Gynocologist tell me I had PCOS, and 2 others tell me I didn't necessarily have it and the multiple cysts on my ovaries didn't necessarily mean PCOS.  The Novasure took care of the bleeding issues and has been a blessing as far as that goes.  I was under general anesthesia with it and my Gyn told me I wouldn't want to be awake during it! 

Last year I had a scare of a multilocular cyst on my ovary (I have had simple cysts before), luckily it resolved on it's own and the cancer markers were normal levels, but it was a scary few months watching and waiting and during that time I wondered, and still do at times, if I should have just gone ahead and had a hysterectomy so I wouldn't have to worry about all these female cancers....

I knew I wasn't going to have any children by that time but just felt like God gave me those organs for a reason and we probably don't know all the reasons, but if they aren't a problem, leave them be.....It is a hard decision but either way you go there are pros and cons. 

I think I am still glad I didn't have the hysterectomy, but the cancer fear crops up from time to time.  (by the way I don't have any female cancers in my family, but I am higher risk because of no pregnancies/children and being young when I started my period- so longer time exposed to estrogen).  Good luck with your decision but go in truely looking at both sides of the issue for you.

Title: Re: Would you have a hysterectomy?
Post by: 4Kids on May 01, 2012, 06:00:47 AM
Just a quick update. After 9 on Day 3, Days 4 and 5 came with only 1 pad each. Then yesterday, nothing.  I thought complaining here was helping  ::)

Then this morning, crampy feelings and red spotting. Just barely enough to get on a mini pad.  Am trying to think of what hormone should cut in at the end of your period that isn't? This is what happened last month for a week of break through bleeding, I think is what they call it.

Overall, a lesser volume, less stress period but I would like it to be done and go away...
Title: Re: Would you have a hysterectomy?
Post by: gardenlover on May 01, 2012, 06:10:13 AM
Have you considered an endometial ablation?  I'd been bleeding almost constantly for over a year after my last of 8 miscarriages.  I was on iron and always had to wear some sort of protection.  It was so frustrating and painful!  I put off the ablation for many months but now I wish I'd done it a year ago!!  I was nervous about having a flare but everything went fine.  I had to take some pain killers the first day and after that it was great.  I bled lightly for about 4-5 weeks afterwards, and that was it. Haven't bled since.  Please...this is much less invasive than a hysto., so it might be a starting point. Do a little research on it... :D
Title: Re: Would you have a hysterectomy?
Post by: 4Kids on May 01, 2012, 06:13:18 AM
You bet, that is what I am waiting for!

Here they do nova sure under local sedation... did not work for me. So glad to hear so many here had to have general for it too!
Title: Re: Would you have a hysterectomy?
Post by: gardenlover on May 01, 2012, 07:18:45 AM
Yes, I was put under general and everything went great.