Many questions after LSH/BSO for pulmonary endo

Hi,
I'm new and have many questions! I am 42, 12 years ago while going thru infertility I was diagnosed with endo. I've had 3 laparoscopies to keep the endo in check and done pretty well. Then last Oct I developed a pneumothorax - my lung collapsed. The collapse required a chest tube and 4 day hospital stay. Only after visits to specialists and my own research did we finally receive the diagnosis of pulmonary or thoracic endo - indicating the endometriosis is in my lungs. I was having chest pain 3 weeks each month and was at a high risk for a pneumothorax each time I started my cycle. While in the process of determining which treatment path to take my lung collapsed again on mar 26. A chest tube was placed, but when the tube was removed on day 4, the lung collapsed immediately again. As a result I underwent thoracic surgery. Part of my lung was removed and the remaining was mechanically irritated to produce adhesions between the lung and the lining to prevent further collapses - a procedure known as pleurodesis. While in the hospital my gyn said we could wait no longer and a hysterectomy was scheduled before I could cycle again. This meant two major surgeries with in 2 weeks.

On April 15th I had an LSH/BSO. I can not go on HRT for fear of activating the endo still in my lungs. With the exception of a complication to my chest as a result of my hysterectomy, the surgery went ok.

I am 2 weeks + 2 days out from my hysterectomy. I wish I were comfortable with the decision to have the hysterectomy. Everyone I spoke with explained it was necessary in order to prevent more damage to my lungs. A benign tumor (adenoma) was also in my uterus which was unknown to us until the surgery. Despite that I am left feeling hollow and disgusted every time I think of my empty abdomen and partial remaining lung.

Does anyone else have/had this feeling of disgust toward their body?

Has anyone dealt with pulmonary endo and a hyster for the treatment? I've been told the hysterectomy may not resolve the lung problem. We can only wait and see. Apparently endo in the lungs is rare with little documentation on treatment results.

Am I doomed to gain weight and lose my libido, especially since I will not be on HRT?

I don't like to talk about my feelings even to my husband and family. There are so many others with much worse problems that I don't feel I have the right to feel so low. Between the fatigue, chest pain, sudden menopause and my emotions things aren't so great right now. I'm feeling kind of angry about it all.

Thanks for any advice.

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There are so many others with much worse problems that I don't feel I have the right to feel so low. Between the fatigue, chest pain, sudden menopause and my emotions things aren't so great right now.

I'd say you have every right to feel low. You've been through a lot in a very short period of time, without really have the time to come to grips with what was happening. Reaching out to your family (especially your husband), along with hystersisters, will help you through this.

You are not doomed to weight gain and no libido due to this. Many women gain no weight at all after going through this surgery. There are creams and alternative medicine that can help with the physical symptoms of menopause.

Hopefully someone will come along here soon to give you more support. Know that we are thinking of you and praying as you start to heal.
Ashley

Would it be possible for you to find a professional to speak with? Maybe your Drs could refer you. What you describe are challenges that anyone would have trouble dealing with in a positive way. I had similar feelings and sought the advice of a psycologist. I had to call several until I found one that "clicked." It was very helpful for me. She even visited me in the hospital the day after surgery. She gave me some ideas for adaptive ways to think about what I was facing. I was in such a downward spiral I could not imagine any hope and was withdrawing from everyone. When you start withdrawing it is beyond what you and your family and friends can reasonably deal with, in my opinion.
I wish you the strength to find and use all the help you need to get though this.

Hi We did have a member here last year who had pulmonary endo, as did her twin sister. Unfortunately, she hasn't been here in a while... but perhaps you could try sending her a private message? Here is a link to one of her posts:

https://www.hystersisters.com/vb2/sho...hreadid=130507

I'm so sorry you had to have a hyst because of this problem. It just doesn't seem fair, does it?

I hope that with time, you'll be able to see yourself as still a beautiful, whole woman. We do!

s,
-Linda

Thank you so much for your replies and caring. You know, just writing about how I feel these days is therapeutic. It sure helps to read about others' experiences and questions. I'm not ready to seek counseling yet - I did that years ago as part of my infertility tx and it wasn't a good experience. I imagine each day will improve. At least today when I woke up, it wasn't raining!

Hi seagate,

I am sorry you have been through so much. It sounds like this has been a lot for you to bear.
You are still early post-op and it is very normal to have feelings about how you feel about your body after surgery. I did not like my body much either after I had the surgery. You are grieving a loss so that is normal to do that, and just takes some time to get through.

Please don't think that this means you have to gain weight or have libido problems. I have not had weight gain and libido is the same to me.

Here is a good link on support for women in menopause and some help on questions about symptoms:

http://health.discovery.com/centers/womens/womens.html

You are welcome to post in our Aching Hearts forum where others like yourself are trying to get through the loss after surgery. It helps to talk to other ladies who can relate to the same feelings you may be having.

We are here for you, and I pray that things get better for you everyday.

s