[Jigs Wife]

So, here is my story...
I am 38, and have already had ovarian cysts and endo removed 3 different times. The last time being before Lupus. Last spring, I had a small out patient procedure, went into MAJOR flare!! My question; if I have the hysterectomy done, what can I expect?

My periods are horrible! And I feel like they cause me to flare every month. So the up side is not having to deal with that. But I would love to hear from anyone who has dealt with this. I want to feel better so bad, but do I risk a major flare for it??? Or do I deal with the "mini" flares monthly??? I am so confused and scared. My obgyn gave me the following options.:
1. do nothing
2. try the d&c again....
3. ablassion
4. Hysterectomy

I go back on Monday to discuss in depth and make a decision. I would really appreciate if anyone has a similar situation to share your story with me. I have almost talked myself into doing nothing and living with it.....help.:sad:

Thanks a bunch!

 

[sam101360]

Hi:

I had Ovarian cancer in 1994 (before Lupus). Had one ovary and part of my uterus removed. Went into early meopause as the shock of the operation disrupted the functioning of the other ovary. By 1998 I was post-menopausal and on HRT, In early 2003 I was DX with lupus.

Last year the HRT was causing problems with my Lupus and Rhumy wanted me off it. Gyno wanted to do ablasion as it is much better for you than a hysterectomy when you have lupus...Rhumy said "no way".

They changed my HRT and all has been OK so far.

I would suggest that you talk to your rhumy before making any decision, as (s)he can best assess the impact on your lupus.

I know this isn't what you were looking for, sorry I could not offer more. I am sure others will post soon.

Stephanie

 

[KarolH]

Hi Jigs,

I had a Total Hysterectomy, ovaries, tubes and uterus at the age of 36 years old. For me it was the best decision I ever made. I agree that you need to get your Rheumy doctor in the loop here and ask his opinion.

You could always try ablation first but if it does not work then a Hysterectomy should be considered. Now a days they can to the Hysterectomy laproscopically so the incision is tiny and recover is quick.

Good luck making a decision and let us know what you decide.

Also, in July 2007 I went through a 6 hour surgery and it did not put me into a major flare at all. I did have some complications yet nothing to do with anything auto immune.

 

[Maia]

I have had a couple of procedures laparoscopically and not had any major recovery complications or invoked lupus flares (including a female surgery for endometriosis and to fix a severely retroflexed uterus). So it certainly is possible that a surgery will not cause a flare.

If your primary problem is bleeding, then the ablation may be a great solution. I'm not sure if they cure the PAIN from periods but they significantly lighten them and usually shorten them. But endometriosis can cause pain before a period as well as after... at least that has been my experience.

When I reached the point where 33% of my life was in moderate to severe pain from endometriosis that is when I had the surgery that helped immensely so thankfully I have not had to think about a hysterectomy. I would be sorely tempted to do it though just to get it over with once and for all instead of enduring monthly lupus flare ups plus the pain that time of the month can bring.

But I can understand why you are so scared... and sometimes the known feels better/safer than the unknown. Just weigh all the pros and cons with yourself and your doctors and I'm sure you'll make the best decision for you for right now.

 

[macfamily53]

Hi Jigs wife

I am from illinois and about eight years ago when i was just 40 years old i decided and the gyno did also that i needed to have the hysterectomy because i was having very heavy bleeding for like 3 weeks or more a month and a lot of cramping along with that.When we went to do it they found with blood test that i was not clotting very quickly.Well that is very dangerous even though we did not know why.They decided to wait to do the hysterectomy and send me to a specialist to find out why i was not clotting duh.If they had only take it one more step of blood test they would of known i had lupus then grrr.Oh well anyway i had it and never regretteded it and had everythiing but my ovieries because i would go into early menapause so they left them.i had it done through my tummy muscle because my uterous was enlarged so much.I am so glad now that i am feeling better eight years later and think eveyr person is differant when they have it done.I just hope when or if you do have it doen you make sure you have some help for a little while after it.Please let us know what you decide and how you are if you have it doen(((hugs))Oh and sorry so long lol.

Tammy

 

[lin]

i had hysterectomy when i was36yrs old, for me i never looked back, i did however have other precedours done, with no effect, what ever you decide,

all the best to you ...Lin xxxxxxxxx

 

[joirish]

:hello:
Hi,

I had a partial hysterectomy in 97/98(cant remember the year). I had a prolapse after my daughter was born(this was repaired) but went again and also i was having 3 periods a month - lupus flaring very bad. The gyn gave me 2 options:
1. a repair
2. Partial hysterectomy

I went with the hysterectomy and feel like i got my life back at that time,i had a vaginal hysterectomy and cos my ovaries are still there no HRT.

The most important thing to think about when you are making a descision is what is the best thing for me???For me it was one of the best descision i have made but it took time to say Goodbye if you can understand to my womb.

Wishing you all the best in the world and hope you have help in making your descision but what ever you do dont do nothing, there is nothing worse then living with another thing besides LUPUS.

Jo

 

[lazylegs]

Hi,

6 years ago I had a radical hysterectomy done vaginally with a laproscopic assist. Not having the monthly cycle greatly decreased the pressure on my varicose veins. The only complication was some bleeding due to 2 sutures that wouldn't heal. I felt great but was required to stay in bed until the bleeding subsided. The rest was sure to have helped the Lupus.

The decision was definitely hard to make. Like you I worried about flaring. My rheumy contacted my gyno and discussed the situation with her which made me more confident.

Good luck with whatever decision you make.

Take care,
Lazylegs

 

[Jigs Wife]

Thanks to everyone who has shared their experience's...
I go back tomorrow to discuss and make a plan. I will let you all know what we decide. I have been in pain all week long from period and mini flare....so this is helping me to lean toward a decision.........I will let you know what happens tomorrow.

 

[Jigs Wife]

well, I have scheduled my surgery for Feb 25....

Going for the vaginal hysterectomy with the laparoscopic assist. We are going to leave my ovaries if possible. There is no cancer, so unless the endo is wrapped around them, they can stay. I am still nervous, but excited about the possibility of less pain every month!! The docs want me to prepare for surgery with pre-op steroids and antibiotics.

I will let everyone know how it goes....if you say a prayer, pray that I have a flare free surgery and speedy recovery.

Thanks to all of you!

 

[KarolH]

Tammy,

Keeping the ovaries is a big thing so I hope that is the case.

Also, vaginal hysterectomy is AWESOME!!!!!

It allows for a quick recovery and minimal pain.

I wish I could have had my done vaginally and kept my ovaries but it just was not a option for me.

I will pray for you and you will be fine.

I think you made a wise decision.:wink2::wink2::wink2:

 

[mary520]

I had my hysterectomy in 06 and I don't regret it for a second. My health has improved so much since then. I wish you the best.

 

[macfamily53]

Hi Tammy

I am sure glad you are having the surgery.Yoy will not regret it one nit and all will go well for you also.i am so glad you can have it done vaginally as it makes a huge differance in recovery time.I wish my overies would of been taken out because at the time i was having trouble with syst and pain from them but it is good idea to leave them also because they say i could of gone through menapause a lot sooner then i wanted to or so they said anyway.My thoughts and prayers are with you for quick painfree recovery(((((hugs)))).Please let us know how you are afterwards when you can.

Tammy
P.S.I sure do like your name he he :hehe:tammy :lol:

 

[onetay]

Tammy,
I too had the same problem. I was about 22 when I had my surgery. I had the surgery because I could not handle the discomfort any more. I was okay and they handled things as they happened. Would I do it again in a heartbeat. I had never had the dnc, I was lucky my obgyn told me he could do the dnc but that in a few months I would have to have it done again. He asked if we were done having kids and my reply was I am done and it really don't matter what (my daughter father wanted it was my body and my pain) he wanted. If he wanted more kids he could move on. My obgyn was very surprised but laughed because he had been treating me long enough to know I was not kidding. He advised that was his choice because he did not see risking flares with every dnc that he would have to do. He then called the dermy that was treating me for the lupus and asked him. With both doctors in agreement we went forward.

Tammy I must say I have never looked back about my choice.
Tammy

 

[sheila t]

Wishing you all the best with your operation.

gentle hugs sheila x

 

[flowershopgirl]

Severe lupus flare & hysterectomy 3 mo. ago

Just wanted to share, I was in midst of major lupus flare when had vag hysterectomy about 3 mo ago. It was hard, I won't try to smooth that over. However, I don't regret it and feel I'm much better off now with that one less added stress on my body each month.

My insurane would not cover my surgery inpatient, so I was only allowed a 23-hr obervation stay. It was rough. Was on heparin injections for 5 days to prevent blood clots from my APS. Wore compression garments in OR & until discharge time. Walked as much as I could every couple of hours to keep my blood flowing.

It was hard & I recovered slower than avg patient due to my lupus, but I am glad I went through with it. The key is that your Rheumatologist and Gynecologist need to work as a team to make sure they feel it is the right timing for you & is in your best interest to proceed.

Good luck, and ask my questions if you would like. There's a great website called hystersisters dot com that gave me lots of info about what to expect.