25 years old and about to have hysterectomy

Hello everyone,

My name is Kelly and I am new to this board. To give you a little update I have a son who is 7 years old and then went through infertilty for 6 years and concieved my little girl through invitro fertilization. My son was a very healthy pregnant, my girl was very difficult. Had premature rupture, in the hospital for 40 days and she was born premature. My husband and I are 200% sure we are done with having any more children.

I started having problems at the age of 18 with reproductive problems. I was diagnosed with PCOS and when had a lap in 2001 they found a small amount of endometriosis and Dr. laser it off. At that time we were pursing having another child, which it took 5.5 years in the end to have her, but we finally did.
I was immediately put on birth control pills after the birth of my daughter and have continously been on them. The past few months I have been having some issues with my menstration; severe cramps, fatigue, loose stools while on period, bloated, etc. I went to my gyno today to talk with him about it and maybe the possiablity that the endo is back and worse then before.

After we talked for a few moments he suggested a total hysterectomy. Ironically I have been thinking about it for the past month and was going to bring it up during my appointment. I have been to the library and done some research on it, plus my Aunt just had a total hysterectomy 10 days ago. So I agreed and do feel that this is the best option for me. It is going to take 5 days just to get approval (hopefully) from the insurance company because of my age. I decided to get a second opionion from my previous gynecologist that was with me through 5 years of my infertility and see what he thinks. If insurance approves I am scheduled for a total hysterectomy on December 27th.

I guess I am just in a "hmmm" stage. On one hand I am young, but husband and I have already accepted and decided we are very blessed to have our two chidren and we do not wish to have any more. I have been dealing with problems since I was 18 and just very tired of dealing with them. He said we can do Lupron, but during my invitro cycle I self administered Lupron injections and feel if I am going to feel like I am in menopause then why not just put me in real menopause instead of medications. My husband is unsure about it, mainly because I think he does not understand it all. He said at my second opinion app. Wed if Dr. also states hysterectomy then he will be behind me 100%. He is able to take about 2-3 weeks off of work to help with recovery as we do have a 2 and a 7 year old. I understand this is a huge choice in my life and one to take seriously.

So I am looking forward to meeting all of you and going through this process together. It seems as if it is all happening so quickly and yet I feel I am very ready for it, I jsut feel as if I have a ton to get done before surgery and recovery.

Thanks for reading and hugs to all,
Kelly

Welcome, Kelly!
I'm fairly new here too.
You sure sound like a very "together" person, and that you have not only considered this alot, but have the sense to listen to your deeper intuition about it.
Good for you getting a second opinion, to be totally sure of any options! And good for your DH for being cautious and ultimately supportive! You sound like a beautiful team.
May you enjoy your precious family. All the best to you as you face into this part of the journey. I'm glad this community is here for you!
XOXOXXX Warmly, Kythe

Hi Kelly to Hystersisters

I'm so sorry to hear that you are having so many things to deal with. I also had endo and I understand the need to find something to help relieve the pain and symptoms from the endo.

I think it is very important to get a second and possibly even a third opinion before making your decision. From my understanding a hysterectomy does not cure PCOS and there are many women who have found that a hysterectomy did not cure their endo.

Please take your time and do some research and reading before you make your decision. Endometriosis is a very complex disease and there are many different ways to treat women who have had a diagnosis of endo.

The biggest controversy that I have read is weather or not to keep the ovaries. My doctor insisted on removing them since endo is fed from estrogen. Some doctors do not think it is neccessary to remove the ovaries. There are many things to take in to consideration with endo in order to have a successful outcome.

I wanted to share some articles from resources that may be very helpful.

Higher recurrence rate with keeping ovaries

Endometriosis resources

PCOS...click here

A good option may be to look in to surgical excision of the endo. This treatment along with using natural progesterone may provide you with years of pain relief.

Progesterone to treat endo

I wanted to share that while I am very happy with the results that my hysterectomy has had on treating my endo, I have had a whirlwind of menopausal problems since my ovaries have been removed. Most of them have been solved by the use of hormones and medications, but I believe it is important to learn the valuable importance of our ovaries. At your young age your ovaries will provide you with years of valuable hormones that are needed to protect against many other life changing diseases.

If you do decide to have the hysterectomy, then you have found a great place of support with the many women who have gone through the same thing. Just please be well informed before making your decision.

Hi Kelly,

Welcome to the "Royal family of Princesses".

I suffered from many years of endo myself and had a TAH/LSO on 11/7/05. I have been through two prior laparoscopies to laser off the endo. The surgeries were only two years apart! So, when it came back with a vengance after 3 years, and I had long ago decided that I was also "done" with having babies. It seemed that the TAH was the best way to go. While I am a bit older than you, (38), the decision to have a hysterectomy did not come easily.

I was terrified of being thrown into menopause and my dr. and I together decided to leave my right ovary for hormonal reasons. I am doing extremely well and the endo pain is gone! Woo Hoo! I have not experienced too much in the way of menopausal symptoms post op (and really didn't expect to because I still have my right ovary), however, I think that my ovary is still a bit sleepy from the surgery and I have experienced some crying spells and some general blah feelings, but all in all I must say that I am really glad that I did it.

You sound like a very wise and mature lady who has really thought this through. Your DH sounds like a "dream". You will need the emotional and physical support from him for those first two or three weeks. I have two children ages 13 and 9 and my DH was able to spend two weeks home with me, which made all the difference in the world.

Kudos to you for getting a second opinion! Perhaps, you could speak to your dr about keeping one ovary. My dr. explained that when he actually got in to do the surgery, if the ovary looked bad that he would take it, but he didn't have to. He did a procedure called Interseed on the right ovary, which is a band around the ovary that protects it from endo. I am hopeful that this will work and that the endo will not return in that ovary.

I'm rambling and I apologize. We seem to have alot in common and I just thought that I would share my experience with you.

Best wishes to you! Please keep us updated on your progress. If you have any questions, please do not hesitate to email me.

Sending you lots of 's!

Tricia

i will write more later but just quickly - hi - i am new also - welcome!!

You sound like such a strong lady - and with a great hubby!

a hysterectomy does NOT NECESSARILY cure endo - i know many pple who have had probs after hyst - so i dont want you to think that it will be a total cure

Do you have a confirmed dx of endo recently? MAybe a laparoscopy could be done b4 the proposed hyst - as it might be something that can be dealt with without a hyst.

will you be on HRT after (most surgeons avoid giving HRT for at LEAST 6-12 months after hyst - as any rememnat of endo will grow again with the oestrogen in the HRT)

Bones - be carefl also on this - HRT will be necessary to protect your bones - - do you have normal bone density (if not - then this could be diffciult - as HRT maintains bone densitym - and if you cant take the HRT for a while to prevent the endo growing..... then could be a problem)

In the UK where i am, surgeons hardly do hysterectomies at our age ( I am also 25)unless its cancer or endo causing severe problems with other bodily functions (i.e adenomyosis, bowel endo, bladder endo etc) in my experience - again someone usually has to have stage 4 disease to even get the surgeon to TALK about hyst at our age)

HOWEVER you are in the USA i presume, so things are obvikously different there - 5 days to get the insurance sorted sounds like bliss - waiting lists for the surgery here can be up to 2 years!!! (socialized medicine!!)

as many have said here - you clearly have your head screwed on and you know what you are doing. I would make sure what the problem is before going for the hyst - as i said earlier - it maybe something that can EASILY be treated by lets say a laparoscopy etc - maybe with sterilisation as well - so that would precent you having to take birth control pills.

Of course your endo may well have progressed to severe, but even then, if you get the right surgeon they can do this laparscopically and without hyst. I am just slightly concerned that your surgeon seemed to readily suggest a hyst when he doesnt know EXACTLY whats going on and you are sooo young!! I would hate you to go through such a major surgery (6-8 weeks off work) and find it was unnecessary or a much minor procedure could have been done.

( a bit of history on me i have stage 4 endo, have had 4 surgeries - endo completely MESSED my insides and i a hyst for me has been mentioned a few times with my surgeon - though at the moment i am undecided, the problem with my endo is that my other conditions make it 100 TIMES worse than a normal stage 4 endo - trust my luck!!! for example keloid internal scarring and von willebrands bleeding disorder).

I hoep i havent seemed negative - i really hope not, it just that i know what you are going through as i am having to rhink about the same thing - and knowing what i do about endo and hysts and the view of the surgeons in the UK - i feel that that second opinion you are haivng is an EXCELLENT idea.

welcome again -

please keep us updated!!

Kelly,
we have alot in common. i am 26 and have a 3yr old son. ( i also have 3 step sons) we too are done haveing kids. i started haveing trouble with endo about 2 yrs ago, but just had a lap in may of this year and was covered in endo and scarring. i felt good for a few months and then the endo came back! i was put on lupron and did that for 3 months, but it was no good. my pain only got worse, so i stopped. the doc suggessed a hyst. which like u i have been think about for quite a few months, so i went for another opinion. the second doc said same thing as the first, but said i was so young i might really want to think about it. he said it was the best chance to to be pain free ( can't remember what that is like). so i decided to go for it. my hyst is on dec 26! my hubby was talking about a hyst long before i was ready to. so best of luck to you and let me know how it goes.

Thank you all so much for your opionions, it is very appreciated. I slept on it last night and now really just going through an up and down stage. I am trying to go through the pros and cons and honestly at my age I am only going upon what I have been reading. Due to my age non of my friends have had this problem so I can not go to them for support and guidance. I am actually thinking of maybe getting another lap and seeing exactly what stage of endo we are dealing with and where it is in it's location. Then maybe I could give Lupron a try. It is difficult to even deal with these problems as I have went through so much in the past 6 years. I swore at one time I was seeing my RE for infertility more then I saw my husband, lol! I am going to ask Dr. tomorrow on second opionion a ton of questions. Given he knows me very well I do really trust his opionion. I am so afraid I am going to give up one set of problems for another and then have to go through 6-8 weeks of recovery, which will be difficult with two children.

This board and you ladies have all been such a wonderful help and support. I spent hours on here last night just looking through everything I could get my hands on. I will post tomorrow what the second Dr. said and where I am standing at that point.

Thank You all so much!

Kelly

Hello,

I so know about the fear of not knowing whether or not you'll regret the choice to go through with this type of major surgery. I am only 27 and have two beautiful children as well. Good luck with the choices that are before you, I'm sure you will make the right choice as to what is right for you and your family. I am glad that you will have the help you will need from your husband!
Drop me a line if you want to talk further.
Best Wishes and Take Care!
Hope to talk to you soon.

	Quote:
Originally Posted by PJL Hi Kelly, He did a procedure called Interseed on the right ovary, which is a band around the ovary that protects it from endo. I am hopeful that this will work and that the endo will not return in that ovary. Tricia

can i ask a quick question tricia - - i thought that keeping the ovary would only feed any endo there - even if its not visible - i.e microscopic

i am sooo soo pleased that your endo pain had gone.

i have done lots of research and have been lead to believe that if i have a hyst, then both ovaries would have to be removed as not to 'feed' any endo - or even START any endo - i.e removal of womb and not the ovary(ies) would be pointless as the ovaries keep the endo going - even if its microscopic and NO surgeon would be able to see at the point of surgery.

I am now completely unsure with EVERYTHING I have read/been told after reading your positive post!

any more info on this would be greatly appreciated. I see a world renound endo specialist and he says the same - maybe my endo is so severe that they wont take the chance of keeping an ovary and restarting the endo.

I have had 4 major laps in the space of 2 years. My endo is one of the worst cases he had seen. I am now on permenant induced meopause (busrelin) due to the severity of it.

I am so interested as a hyst has been suggested many times for me - but i have resisted it - but recently i have been thinking seriously about it and have hence joined this (wonderful) group.

Hope you can help

thanks SO SO much!!

Hi Kelly! I will tell you about my experience with endo and ovaries but I can't help with PCOS.

I had a LAVH due to Stage IV Endo at the age of 25. Prior to my hyst, I had bleed pretty much continuously for 2 yrs. I had a lap not quite 2 months before my hyst where the endo was discovered and cauterized. Well, they could not cauterize what was on my bowel walls and my uterus was literally covered so that had to be left alone until the hyst. Also, with my hyst I had an appendectomy as my appendix was completely inflammed with endo and ready to burst.

So, I know what it is like to have a hyst at a young age. My DH was very supportive and we made the decision together based on research, male GYN opinion, female GP opinion, and the opinion of a female RN who is a relative but also personally knows several women who have dealt with endo in various ways. FYI, my RN relative is an advocate of 2nd opinions being from an MD of the opposite sex as it can sometimes add a different perspective. In your case, it looks as if you will be seeing a more specific speciallist, so this should give you the additional perspective as well.

As I was 25, we decided I should keep my ovaries. This does mean they are feeding the endo on my bowel walls and all the micro stuff that was not visible. And now, 5 yrs later, I am starting to have some pain issues on the right side. The pain is not constant nor is it intolerable at this point. And it is much easier to deal with the many of the hormonal issues surgical menopause can create. Oh, your ovaries can go into shock after a hyst, as mine did, so I did have bouts of menopause symptoms for quite awhile after my hyst so that is how I know for me! But different ladies have different symptoms--both from endo and from surgical and/or natural menopause.

So, please get a second opinion. Ask any and every question you can think of. Discuss all options. A hyst is irreversible as you know, and not a complete cure. And there are a lot of issues involved with keeping or removing your ovaries, esp at 25 yrs of age. What is right for me, is not neccessarily going to be right for you. Each of us are different ladies with different bodies, chemistries, etc. and we will all react differently to a hyst.

I do not regret my hyst for one sec. I tell my GYN quite frequently "Thank you" and he tells me "I did not want to do your hyst" but I had no other options available to me for my specific health situation. As I had always expected to have a hyst for one reason or another, because of my family history, both paternal and maternal, it was not as stressful for me as it can be for some ladies. This is a very emotionallly involved surgery and you can not always predict what the outcome will be.

Like you, I had already had two children, so I felt blessed that my female problems came after the pregnancies, not before.

I wish you the best as you make your decision. You may find interesting and helpful information by reading the Endo/Adeno Stories here at our site. Do keep us posted and search the entire site for as much info you can find. All drs are different, all of us ladies are different, so you will find many different methods, theories, suggestions here at the site. Discuss them all with both of your drs and do what is best for you. Many s to you!