TLH: New and scared!!! Need advice

Hi ladies!!!
I'm new here so let me tell you a little bit about myself! I'm 26 years old and scheduled my TLH last Friday! I was diagnosed with stage 4 Endo 3 years ago and my dr removed as much as possible and placed me Lurpon which became too expensive since our insurance wouldn't cover it then put me on BC(nuvaring) and after 6 years of trying to conceive, I became pregnant with my now 2 year old son! I had many complications during pregnancy which I now say was due to Adenomyosis! I went into labor at 32 weeks but they stopped it and put me on bed rest till I was about 37 weeks when I went back to work for a whole week before I started hurting again and made it to the hospital in enough time for my placenta to finish detaching! My dr thinks it started at 34 weeks because that's when my baby stopped growing! He was born via cartoon at a small 5 lbs but healthy none the less! So flash foward six months and the pain starts to slowly come back all the while I'm on depo shot not only that but I bled the entire year I was on the depo! The pain just kept getting progressively worse each month then these past couple of months the pain was constant and wouldn't go away then I started having contractions two weeks ago that we're rather painful! So I made an appointment to see my dr! She told me my uterus was more than double the size it should be and diagnosed me with adenomyosis! I had been on BC for the pain for 8 years and it never helped and we decided the Lupron was far more than we wanted to continue to pay she said my only other option was a TH so we scheduled it for the end of the month! I'm looking for a few answers and advice from you ladies as far as recovery time and HRT! I'm scared also so any comforting thoughts or advice on that is welcome as well!!! TLH scheduled 9-30-13!!! Thanks in advance ladies!!!

I had my TLH 5 months ago .. I was scared too.. All the talk and stories I read and googled... My surgery was at 10 am I was home the same night.. Pain was tolerable a few Vicodin s then on Tylenol .. Recovery was way better and faster than anything I read ! I was diagnosed with stage 1 endo cancer .. Not taking any HRT due to the fact I'm on tamoxifen for Breast cancer / lumpectomy!!!
I have night sweats and hot flashes but other than that I'm happy and healthy! Good luck to you!

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Originally Posted by dmperch I had my TLH 5 months ago .. I was scared too.. All the talk and stories I read and googled... My surgery was at 10 am I was home the same night.. Pain was tolerable a few Vicodin s then on Tylenol .. Recovery was way better and faster than anything I read ! I was diagnosed with stage 1 endo cancer .. Not taking any HRT due to the fact I'm on tamoxifen for Breast cancer / lumpectomy!!! I have night sweats and hot flashes but other than that I'm happy and healthy! Good luck to you!

Thanks so much! How about sex wise? Do you enjoy it! I don't enjoy it much now due to the pain but I hate that at the age of 27 I have to force myself to have sex and I feel like a bad wife for not giving my husband that lol

Don't believe everything you read ... Unfortunately my marriage suffered greatly during my healing process I don't blame it all on my health I'm 48 and married for 27 years lots of things changed.. My husband and I are working on our relationship ( sex not being the priority ) give it all you can!!! If you have a strong living relationship you'll be just fine!

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Originally Posted by dmperch Don't believe everything you read ... Unfortunately my marriage suffered greatly during my healing process I don't blame it all on my health I'm 48 and married for 27 years lots of things changed.. My husband and I are working on our relationship ( sex not being the priority ) give it all you can!!! If you have a strong living relationship you'll be just fine!

We have a very strong relationship with out sex but I don't want him to have to suffer in the end! Hes ready for me to get this done because he said he knows I'm in pain and he hates it! I'm so very sorry about you and your husband and I hope all is going to be well with you guys!!

I'm 26 and on day 4 post op I had a laparoscopic hysterectomy removed my tubes and uterus do to a tumor! I haven't had much pain from the hysterectomy, incisions. I had a hard time after surgery with my bladder it wentinto shock and was having spasms and iI could not drain it on my own so had to have a Cath for 3 days and take some meds to jump start my bladder and it was pretty horrible. But I've started with freezing chills that in ten mins turn into me striping off soaking wet sweat clothes. I read on this site the overis can go into shock and not work after surgery but begin again later on. I'm calling my doc tomorrow bc its very scary to have these crazy flashes I hope you have a good experience if I wouldn't have had bladder problems I would have not complaints. I've also do plenty of research on sex after hysterectomy and it shouldn't be affected. Good luck

Hey divashley!!! Thanks they are going to be taking my ovaries as well so I shouldn't have to worry about those lol and hopefully I do not have to worry about my bladder!!! Hope it all goes smooth for you the rest of the time!!! Good luck and keep me posted on your recovery!!!

Hi Mlh8586,

I'm so sorry you've been having such a tough time. I also was diagnosed with stage IV endo and adenomyosis, but that wasn't diagnosed until my hysterectomy. As for the adenomysis, a hysterectomy is a cure, however, a hysterectomy does not necessarily cure endometriosis. Here is an article that may help explain: Excision or Hysterectomy. If any endo is left behind on the bowels or bladder, or any surface, you can still have pain and other symptoms. The best bet of remaining endo and pain free is excision done by a doctor who specializes in treating endometriosis: endo specialist. Also, I am curious about why you are having your ovaries removed. Even that won't keep endo from returning as endo can make its own estrogen, and removing the ovaries can lead to serious problems including bone loss, concentration problems, heart issues, depression or anxiety, and sexual problems including vaginal atrophy (Should I keep my ovaries?).

I do understand how devastating endo and adeno can be. I suffered with them for years without knowing what was wrong with me. I had my surgery for suspected ovarian cancer. The doc found that endo had made mush of my ovaries and the outside of uterus was covered in it AND I had adeno so everything had to go. I was 45. Since my surgeon was a gynecological oncologist he had the expertise and equipment to excise all the endo. I now do HRT, and it is not easy. Getting the dose right can be really tricky, even knowing which hormones to take can be difficult. It's been a lot of trial and error. Now that I'm 9 months out, I'm getting more balanced, but I think I still have a little tweaking to do. Overall though, I'm doing well with my HRT. I wish I could have saved at least one ovary though and avoided all this. Natural menopause is much easier than surgical menopause. In general, women who lose both ovaries have a shorter life expectancy. Of course, some of us have a high risk of cancer or the ovaries are diseased, and life is better without them. I'm just suggesting you consider saving them if you can.

Here at HysterSisters we strongly recommend second opinions. If at all possible, get one. An endo specialist would be best. Remember, this is something that cannot be undone. I don't regret my hysterectomy and oophorectomy, but I'm glad I was aware of all my options and had 3 opinions. I don't have to second guess myself.

As for sex, it hurt too much the year before my hysterectomy. Since my hysterectomy, sex has been great. We now have a wonderful sex life. It's great to hear that your husband is so supportive!

I wish you the very best.