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adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

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Unread 02-07-2012, 08:45 PM
adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Hi everyone,

I have been suffering from pelvic pain since having a cesarean section in late 2009. In 2010, I had a tubal ligation, and the surgeon said that I have a lot of adhesions, and that my uterus is fused to my abdominal wall. I had subsequent surgery in 2011 to remove the adhesions and one of my fallopian tubes, which was swollen. This surgery was meant to ease the pelvic pain...but it did not help at all.
In fact, as time goes on, the pain has gotten worse and has become chronic rather than cyclical. My doctor is now saying he thinks the adhesions may be from endometriosis. He told me one option is a drug called something like "lupron" (?) but that he does not want to prescribe that because it is long-lasting and may interfere with my mood stability (I have bipolar disorder).

I am scheduled for a hysterectomy to remove the uterus, both ovaries, and remaining fallopian tube in mid-March. My doctor is hoping this will help my chronic pain. However, I have some reservations about the surgery. I am 36 and have not started menopause yet, and am concerned about what it will be like to have surgical menopause. I have bipolar disorder, and my psychiatrist has told me that it is common for patients with mood disorders to suffer relapse after such an operation because of the plunge in hormones such as estrogen. My gynecologist is planning on having me take estrogen following the surgery, but I have been told that it significantly raises the risk of breast cancer. My grandmother had breast cancer, so I am concerned about being even more at risk...but I'm also afraid of becoming very depressed if I don't take it after the surgery.

Despite my reservations about the operation, I am desperate for relief from the pain. I have been to the ER several times in the last two years because it can get so severe. At best, it is uncomfortable, and when it's at it's worst, it's debilitating. Tylenol or ibuprofen do not provide much relief, and I have been prescribed narcotic painkillers but do not take them because I do not dare have my judgment impaired while taking care of my two-year-old or in case I need to drive.

I would really welcome any advice. I kind of doubt that I really have endometriosis, but there is no question that I have adhesional disease. I have very basic insurance because I am on disability for my psychiatric problems, and I do not have the money to pay for procedures not covered by medicaid or Medicare.

Thanks (and sorry if my post was too long!)
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Unread 02-07-2012, 11:14 PM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Wow! I can relate! The following may be long but I was excited to see your post and can really identify with you! Best wishes to you!

I am 34 years old. I had two c-sections (2003 & 2005). I have had severe pain since the first c-section. I have not had all the procedures between the c-sections and a hysterectomy that you have had – BUT:
Two weeks ago (1/23/12) I was scheduled for a LAVH planning to keep my ovaries. Let me back up I failed to stress the reason I was exploring a hysterectomy – the PAIN – so hard to explain to anyone that has not experienced it. My husband was sympathetic (the pain was so bad we saw a counselor that sent us to a medical doctor) and my GYN doctor acknowledged my pain but neither one truly seemed to understand.

Back to surgery date – I was scheduled for a LAVH which was very quickly converted to a radical TVH due to a total surprise of Endometriosis!

The procedure was performed with me in a vertical position. All my abdominal organs (kidneys, bladder, liver, stomach, appendix (so inflamed it almost had to be surgically removed), and most of my intestines) had to be removed from my abdominal cavity and thoroughly cleaned of extensive endometriosis and adhesions. My bladder and uterus were fully fussed. It took over 2 hours to separate them and them reinforce my bladder from the weak spots. My ovaries, tubes and uterus were destroyed by the endometriosis. The doctor lined my body cavity with a dissolvable silk like material to prevent adhesions; in addition she had to make silk pillowcases for each of my organs to keep them from adhering to each other. She then returned all my organs to my body cavity.

The doctor apologized to my husband when she called to tell him she was opening my abdomen- not for having to open me for the procedure BUT for the amount of pain I had to be in due to the internal damage she would have to remove and repair! When the surgery was over she told me she had no idea that the pain I had shared with her was to the extent it must have been. It was nice to be justified for the torture I experienced for the past 9 years!

My surgery was from 7am – 12:30pm at 5pm I was in FULL surgical menopause – post op had failed to place a hormone patch on me! It was bad. It took the pharmacy 3 long & hard hours to get us the patch. I am on hormones through the recovery period (I strongly recommend this!) then we will discuss options when I go for follow up and have healed further.

I will not try to say that I understand your journey with bi-polar but I have had my own journey with anxiety due to asperger’s syndrome (an autism spectrum disorder). I was concerned that the hormones would be bad for my mood and anxiety. This was heightened the first few days home when my anxiety was heightened and sleep was very difficult. This ended as I got off the pain meds and the anesthesia began to work out of my system – about 5 – 7 days post op.

I am now only on Aleve every 12 hours with Tylenol as needed for breakthrough pain. I am taking a high dose of hormone for now. My symptoms are under control and I feel that is helping my recovery.

I wish you the best as you prepare for your surgery. I am so sorry for your pain and pray you gain clarity and peace as you near your surgery date.

One more thought – my aunt (diagnosed with stage 4 breast cancer at age 36) and grandfather (her father – diagnosed after her), on the side of the family I take most after, died last year due to cancer. So this is a real concern for me as well. I still suggest the hormones to hold the menopause symptoms at bay. As I am recovering – it’s been the best decision for me!

Please feel free to post if you have additional concerns or want to talk more.

1/23/12 TAH/BSO, surgical menopause with HRT through recovery (will discuss options after 8 weeks of recovery)
Unread 02-08-2012, 01:56 AM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Thanks so much for your post...
it means so much to hear from someone else, especially because it sounds like we are going through such similar ordeals.
I had no idea that surgical menopause starts so quickly without the hormones, in a matter of hours! I will be sure to talk to my gyn doctor ahead of time so that hopefully I can avoid what you went through right after your surgery.
My doctor said after my tubal that I am "a mess" inside--he didn't say it in a mean way, but in a way like he was surprised and fascinated by it--and he showed me pictures of the adhesions. He said basically all my organs are attached in ways they're not supposed to be.
My surgery is probably going to be abdominal. The doc said he will try to do it laparoscopically, but that his expectation is that he will need to go ahead with an incision where my c-section was.
I guess my two biggest fears are the effects on my emotions afterward, and the possibility that I may still have pain even after healing from the operation.
Anyway, I appreciate your reply very much. I don't know anyone personally who has had this done for this reason, everyone I've talked with who has had a hysterectomy has had it for fibroids, so it is good to hear from someone who had it for a similar reason as mine.
I hope your recovery goes well and that it takes care of the pain you were in. I know what you mean about others not really knowing how bad it is, such as husbands or doctors. My husband tries to be sympathetic, and even though he is nice about it I know that he doesn't have a clue how bad it can get, and really neither do most of the people close to me, because I don't complain much (what good would it do, you know?) I think like many things, it's one of those things you have to experience to really get how bad it can be.

Take care,
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Unread 02-08-2012, 02:50 AM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Hi ladies,

I feel like I can relate to you guys so wanted to join in I am 33 scheduled for a TAH/BSO. I have had pain since my first of two c-sections (2007). I have had two operations already to remove endometriosis (endometrioma's) from my abdominal wall (transplanted during the section). I am having to have the TAH/BSO because I have another endometriomia. This one is located very conviently in my rectus abdominal muscle. I am going to have to have part of my muscle removed and the hole repaired. There will be two surgeons performing my operation on the 14th.

On my last c-section the Dr. commented in his operative report that he seen endometriosis (I had my tubes tied too). He does not say where so the new Dr. (and my 3rd opinion before doing this) wont know whats going on with that until he gets in there. This will be my 6th abdominal surgery (counting the two sections). One of the surgeries removed two foot of intestines throug a very large incision down the middle of my abdomin so they anticipate many adhesions and lots of scar tissue.

You would think after multiple surgeries I would be a pro but I so darn nervous. The gernal surgeon doing the muscle part was adament that I could not lift or bend and do stuff for 6 weeks. It's very upsetting to me b/c my little girl still requires that.

I am scared to death of surgical menopause. I pray I respond well to ERT. They have tried to treat with bcp's but I have tried 4 different types and all 4 caused blood clots (not just one) in the superficial legs of my veins. They plan to do a low dose patch, which will by pass the liver, and reduce the chance of clots.

I pray this helps all of us enjoy our lives much better!
Unread 02-08-2012, 11:23 AM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Hi (((sara9)))!

I am glad you are already finding support and I want to share some information with you, too.

When you had your prior laparoscopies, did your surgeon diagnosis you with endometriosis? The most definite way to diagnose endometriosis is through surgery so if it was not detected during your last two surgeries, you are correct that you may not have endometriosis. On the other hand, not all doctors are able to recognize the many forms of endometriosis. Thus, having surgery with the same surgeon might not be wise as he may continue to miss the endometriosis.

Removing the uterus and even both ovaries doesn't remove the existing endometriosis and thus may not solve our pain or adhesions issues. It is important to have a surgeon who is specifically knowledgeable and skilled with treating endometriosis. As long as there are implants, the pain and symptoms can continue. Many of us have even required further surgery following our hysterectomy as our local OB/GYN was not able to completely excise all of our endometriosis. Have you had a second opinion yet? There may be a teaching facility that would have a knowledgeable doctor and would accept your insurance.

Endometriosis can set up an environment for adhesions because of the inflammation and irritation it causes and many of us with endometriosis do have more extensive adhesions than our peers. However, the endometriosis was also visible and diagnosed so I would think if endometriosis was the culprit for you there would be evidence from your last two surgeries. Was anything mentioned in your surgical reports or pathology reports? Any endometriosis noted in photos?

Adhesion barriers can be used and for some they are effective. During my last surgery, my endometriosis specialist used Interceed and it seems to have done its job. Having the laparoscopy with the specialist also finally ended my chronic pelvic pain from endometriosis and adhesions.

To learn more specifically about endometriosis, you can pop over to our Endometriosis Support forum. We a lot of resources there and women who have been on this endometriosis road for awhile.

If you do have an endometriosis diagnosis, it is going to complicate any HRT. However, it sounds like in your case the bi-polar will take precedent over endometriosis when making final decisions. If you can tolerate it, you may need to use both estrogen replacement and progesterone. Progesterone could help keep any remaining endometriosis at bay while the estrogen provides you with the menopause symptom relief you would need.

You will need to work closely with your psychiatrist during the days leading up to surgery, during your recovery, and as you work your way through the hormone jungle. Your maintenance meds may have to be adjusted to accommodate the stress of the next several weeks and until you can work out the right HRT for you. You could also discuss Lupron with this doctor. There are pros and cons associated with it and each women has her own experience. But there have been some with similar psychiatric issues who used Lupron to help determine how they would be affected by surgical menopause.

I know all of this can be physically and emotionally draining, and I wish I could tell you that surgery would fix everything for you. But I can't. Besides endometriosis not being cured with a hysterectomy and oophorectomy, those surgeries could allow for the formation of new adhesions. Also, we don't call it the "Hormone Jungle" for no reason and having bi-polar and possibly endometriosis adds to the complexity of your hormone picture.

You are absolutely doing the right thing by asking some questions. I would also recommend doing some research on reputable medical sites, getting at least a second opinion, talk to your GP, and keep your psychiatrist involved every step of the way.

I wish you well and hope you and your medical team find a successful solution for you!

Unread 02-08-2012, 08:32 PM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Weiser, what a thoughtful response! That is what is so wonderful about this many kind sisters who take the time to share.

Sara, I echo much of what Weiser said. I had pain so severe I would cry and often it would radiate down my legs. The period before my surgery it went all the way to my feet and I thought I was going to crawl out of my skin. Sometimes I had pain other times of the month. Endo is a tricky thing. Only diagnosed by surgery and by someone good at diagnosing it.

I have struggled with depression in the past and after reading the manufacturer's packet on Lupron decided I wasn't taking the risk of that. Then I saw an endo specialist who said the Lupron would only keep the suspected endo at bay as long as I took it. The only way to get rid of it would be excision. I agree with getting an opinion from someone who specializes in this type of surgery, not just a general OB/GYN. My primary GYN sent me to my surgeon who is trained more than most to recognize endo. At my f/u appt he reviewed the pictures and pointed out some of the endo he cut out that most docs would not have because they are not trained to 1. recognize it and 2. cut it out, particularly areas on organs.

Because of my age he wanted to save the ovaries (even though can cause the endo to recur) but one was so bad he had to take it. So, I can't speak to the menopause part. Would it be an option to keep an ovary? Would that estrogen be less harmful in terms of cancer risk than HRT from both being removed? I hope you find some answers and peace. It's good you are keeping your psychiatrist in the loop. Surgery can be distressing for anyone, regardless of her history.
Unread 02-22-2012, 09:31 PM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

A belated thank you for the replies, especially the last one with the suggestion about keeping one ovary. I asked my doctor about that after reading the idea and he said that he will leave an ovary if either of them looks normal but he doubts that will be the case and that if he finds endometriosis that it would not be a good idea. But, at least now I know that if either of them look ok, I might get to keep one, which is very important to me, especially considering the possible effects that surgical menopause might have on my moods, considering the bipolar aspect.
Unread 02-23-2012, 12:12 PM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Originally Posted by sara9 View Post
I asked my doctor about that after reading the idea and he said that he will leave an ovary if either of them looks normal but he doubts that will be the case and that if he finds endometriosis that it would not be a good idea.
Based on your doctor's comment, if you want to keep one or both ovaries you probably should not go into OR with this doctor as more than likely both of your ovaries will be removed if endometriosis is found. From what you have shared, his philosophy sounds like "no ovaries means no estrogen which means no endometriosis" and/or "endometriosis dictates the removal of the ovaries." Unfortunately, neither is necessarily true but it is a common belief among general OB/GYNs.

Along those lines, some doctors with those beliefs do not prescribe HRT in the hopes of keeping any remaining endometriosis at bay and that could be a big problem for you.

For more information about endometriosis and hormones/ovaries, you can pop over to our Endometriosis Support forum.

So please, get a second opinion and make sure that you and your doctor are fully understanding each other before you head into OR.

Unread 02-24-2012, 07:33 PM
Re: adhesions/possible endometriosis, scheduled for hysterectomy, menopause concerns

Hi Sara9,

I think you have received some wonderful responses already, but I did want to chime in with my experience.

I am 3 weeks post OP. I had a total abdominal hysterectomy with both ovaries removed due to endometriosis stage IV and two abcessed ovaries that the doctors didn't know I had.

Pre Op my doctor just thought I would have a simple LAP with removal of a chocolate cyst (endometrioma), but prepared me for the possibility that she might have to do a total hysterectomy with removal of both ovaries if she found cancer. (There was a small chance since my mom died of breast cancer, that I might have ovarian cancer.)

I was cool with the idea of having one ovary removed, but freaked out at the possibility of having both ovaries removed and being catapulted into surgical menopause. I did not want to take HRT because of the cancer risks, but I was also really scared of the emotional impact having both ovaries would have on me especially since I read that menopause can be difficult for those of us with depression or bipolar.

I do fall on the mood disorder spectrum although I have been able to manage my symptoms with weekly community acupuncture, Chinese herbs, supplements, exercise and other stress management rather than meds.

Anyway, as far as having both my ovaries removed, so far I have been really lucky. I have read about women who woke up from surgery in a hot flash, but I am in week 3 post OP, and I have had very mild symptoms which only started on day 20 after surgery. Just a couple of times my hands have become hot and my face flushed, but that passed quickly. I have felt a bit of agitation the last couple of days too, but that has also been manageable.

I did not get a estrogen patch after surgery nor am I on any HRT. I am just going to see how it goes.

Perhaps my age is a factor in the mildness of my symptoms. I'm 42. I have read the younger you are and the further you are away from menopause the more estrogen your body produces thus making surgical menopause harder because the drop in estrogen levels is much steeper.

Of course my body could still be in the honey moon phase! Our bodies store estrogen in our fat cells and I have plenty of those. Our adrenals also produce some estrogen. Perhaps my body is tapping into those two supplies right now.

As far as the concerns you expressed, they are very valid! I can understand being sacred about surgical menopause spiraling you into relapse, but also being afraid of the cancer risk of HRT.

I do like the advise another sister gave to work closely with your pdoc before, during and after surgery.

Sending lots of light. love, and healing to you!

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