Feeling Cheated: No suspicion/Dx Until Hysto

Since I had my first OBGYN appointment (and maybe earlier), I have had every symptom of Endo, and not known about the disease, never even heard of it except in passing. I knew that it was a painful disease that some people got, but I didn't even know that it was restricted to women. Not for sure anyway.

My doctor never spoke to me about Endo, risk factors, or anything else, except for when I asked him about having a hysterectomy. Hysto was the only option I knew of that might finally relieve my debilitating pain and excessive bleeding. I would no longer have to worry about when my cycle was going to start, and my bowels wouldn't act up so much if I didn't have a uterus and thus, didn't have periods.

Pretty logical thought pattern, especially if you've no idea what Endo is, or that you might have it...

Throughout the years, I have been to the ER repeatedly for severe menstrual pain, and even spent 6yrs on Depo at one point to prevent periods and the pain that went along with them. Unfortunately for me, another side effect was severe weight gain, elevating my genetic risk of diabetes, heart disease, high blood pressure, and degenerative arthritis, so I had to stop getting the shot that improved my quality of life so much.

The only mention my doctor made about Endo, was during our surgical consultation, he mentioned off-hand that he'd like to leave my ovaries, but if there were an unforeseen problem, like endometriosis or something, he might need to take them too. That's it. No other mention of it, and I thought nothing of it. My OB had always given me very complete information about everything, so when he just shot past that possibility, I assumed that there was very little risk of any such a thing being the case or being necessary. I also assumed that the only way to take care of Endo, was to remove the parts effected. That's the way he said it anyway, and I could always trust him, so I had no questions.

So when we went into surgery, and he told me during the procedure (I was awake for it, spinal block) that he was going to have to take my ovaries and tubes because they were covered in Endo, I thought that was my only choice, the only option available to me, and I agreed to their removal.

Now, 6wks later, I come to the Endo forum on my beloved HysterSisters to discover that there were several options available to me. Options that I had never heard of and that had never been discussed with me?! I could have KEPT my ovaries?!? No arguments with my DR over HRT vs NHRT/bio-identical, no menopause at 34. No late-night marathon reading sessions to get up to date on information I shouldn't have needed until at least 10 years from now. No weakness or frailty due to lack of hormones, no crying jags, no emotional trauma...

I feel cheated and lied to. I feel like my DR just did what was most convenient for him, instead of actually doing the work necessary to give me the proper and complete medical care that I deserved.

Just because I didn't know, doesn't mean that I should have been taken advantage of like this. I should have been informed, even if it was right there on the operating table! Even if it was just a quick "hey, you have endo, that's why you've been hurting so bad all of these years. I'm going to go ahead and take your uterus because you don't want it anyway, but there are methods we can try to maybe save your ovaries. Do you want to try those first, and risk surgery again if they don't work, or would you like me to take them now and start you on hormone replacements to prevent menopause, that you'll have to take for years until you hit a "normal" age for menopause?"

Really, would those few short sentences have taken so very freaking long to spit out instead of just ripping out everything that made me the strong and capable woman I once was?

You're right - it probably was a lot easier for your dr to just remove them. I think you'd have had to see an endometriosis specialist if you wanted to keep the ovaries because it takes a very skilled surgeon/specialist to be able to remove the endo around/on the ovaries yet save them.

Same happened to me. I should have researched more ahead of time. Drs just want to get it over with and move on it seems.... My dx came when pelvic mass was being removed - turned out to totally engulf the ovaries/tubes so the dr yanked it all.

I hear you. I have different issues but I know that "was this necessary" feeling to some extent myself. Women don't end up with all the info they need sometimes and how do you know? Its hard to look back and wonder what if. I hope you can get through this, and get the hormones regulated so you feel better. Sending hugs.

(((Kryistina)))

I am so sorry you feel cheated and that your diagnosis has been such a surprise for you. Let me see if I can ease your mind some, especially since you can't go back and change the past.

There are many, many doctors who automatically remove the ovaries of patients with endometriosis. The reasoning is that the ovaries produce quite a bit of estrogen, the fuel for endometriosis. Thus, to stop the endometriosis, they feel the uterus and the ovaries should be removed. Some of these doctors will allow limited HRT reasoning the low dose ERT might not be an issue and/or they feel confident they removed all of the endo, and some do not allow any HRT believing the best way to minimize endometriosis recurrence risks is to eliminate all estrogen, period.

Also, some women with endometriosis have such diseased ovaries that they can't be saved. Endometriosis can completely consume and destroy them, rendering them useless. This may have been the case for you.

Something else to keep in mind is that without a laparoscopy, endometriosis cannot be definitely detected. It rarely ever shows up on any test. Thus, there are many ladies who have come out of a hysterectomy with an endometriosis diagnosis they had no idea was possible, especially since there can be such a wide range of symptoms and some ladies don't experience all or many of them or the symptoms mimic more than one condition.

It doesn't sound like your doctor really suspected endometriosis as being the culprit, hence he only mentioned it in passing. It also sounds like he feels that a BSO is necessary for women with endometriosis and/or your ovaries were quite damaged.

Since you are now without your ovaries, it is possible you will find a dose of estrogen replacement to provide what you need for your overall health but also keep any remaining endo at bay, especially if you also use progesterone or progestin. If you are having a battle with your doctor over this issue, do seek the opinion of someone knowledgeable regarding both endometriosis and hormones. If you can see an endometriosis specialist great! If not, try an endocrinologist. Your GP may also be able to refer you to someone or help you.

On another front, it is because of woman like you that I am here on the site and also a reason that Kathy, the site owner, has created Give Me A Second. I get very frustrated when women are not given the best care possible for endometriosis and when misinformation is spread about this condition. I hope my little part helps make a difference for someone.

My best advice for you is to take everything one day at a time, but make steps forward. None of us can change the past or undo our surgeries no matter how things have turned out. Take some time to learn about endometriosis but always hope for the best! The hormone jungle can be a tangle, especially with an endometriosis diagnosis, but patients and perseverance can help guide you to the right balance for you! If you have never kept a symptom journal before, now will be a good time to start one!

My goes out to you and I wish I had a perfect answer to share that would make everything well for you. But there isn't one.

Do know that there are many of us here who do understand much of what you are going through and we will offer as much support and information as we can! You are not alone!

Wow, thank you so much! This really helped to ease my mind. Thanks for taking the time to type it to me.

I've scheduled another appointment with my doctor for tomorrow morning to discuss this, and my BHRT that I'm trying to strong-arm him into giving me.

I think that he got all of the endo, based on the HRT he tried to give me, to start taking at three weeks.

For some odd reason, he seems to think that I only need one type of estrogen, no progesterone, and no T, even though my body was producing three estrogens, P, & T 6 weeks ago. Until earlier today (my 6wk post-op appt.), when I set him right, he didn't think anything of giving me concentrated horse urine to mimic my missing estrogens instead of something that is biochemically identical to what my body, until very recently, produced on it's own.

I think I'm going to try to find an Endo specialist or an endocrinologist if I can't get my OBGYN to do the job correctly. Heck, I might do that anyway. I will likely be talking to my GP as well, to see if I can maybe get him to comply with my insistence on receiving complete and proper health care; especially if my OBGYN refuses my needs.

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Originally Posted by Kryistina he didn't think anything of giving me concentrated horse urine to mimic my missing estrogens

(((Kryistina))) Are you aware that there is no actual horse urine in Premarin? Premarin is a mixture of estrogens, the primary one of which is estrone -- one of the three estrogens our ovaries produced. Estrone makes up about 50% of Premarin; the next most abundant component is equilin, a conjugated equine estrogen. While it's true that the estrogens in Premarin are isolated from the urine of pregnant mares, they undergo processing in a plant that removes any trace of actual urine. Oh, and by the way, there are a few compounds in Premarin which, in humans, have a slight androgenic action, so sometimes women on Premarin do not have libido problems the way those of us on estradiol do.

A bit of history, fyi ... the very first attempt at HRT for humans involved the isolation of sex hormones from the urine of pregnant women, because that is the easiest place to find them. That attempt was very successful, but is obviously not commercially viable, which is why attention was turned to looking for an animal which could be raised to produce hormones that would be similar enough to our own that the HRT derived from it would be effective. Premarin was the result, and it's been helping women deal with menopausal symptoms successfully for decades. If you do not care for the way it's produced, that's your choice; but there are many women for which it's the only thing that seems to work, so Hystersisters does not advocate for or against any particular HRT product, including Premarin.

Now, as for finding the best HRTs for your own personal situation, if you choose to use bio-identicals, great. I use bio-identical HRTs myself and have for the past eight years. However, just because the ovaries were removed, that doesn't mean your hormone levels are now *zero* and you can just add a cocktail of estrogens, progesterone and testosterone and be balanced. Oh, no, it definitely doesn't work that way. In fact, we find that the women who jump in with all three hormones together from day one are often the ones who have the most trouble finding balance.

The best approach, imho, is a very systematic one. We recommend starting off with estrogen only, whether it be bio-identical or not, unless your history dictates a need for balance with progesterone or a synthetic progestin because of a worry about returning endo -- your doctor would be the one best able to recommend to you whether or not you need progesterone or a progestin at the start. Start with a moderate dose and give it several weeks. Keep a journal of your symptoms along with which vitamins, supplements, HRTs and other meds you're on.

In time, you'll know whether your initial dose of estrogen-only HRT is right for you or if it needs adjusting up or down. Working closely with your doctor during this process works much better than alienating him/her by dictating what you think you need.

If, once you've gotten to the best estrogen dose for you, you still have symptoms, you can look at whether you might need progesterone. Not everyone does. Your body is able to make progesterone from dietary cholesterol, and for some women that source provides enough for their needs. Others need to add a little bit of progesterone. If you do, resist the temptation to have it mixed in with your estrogen, because then you cannot adjust the dose of progesterone without adjusting the estrogen, too, and you don't want to mess with success. I use a tiny dab of OTC progesterone cream at night, but did not always use it. My first year or so post op, any progesterone at all made me feel awful. It was only after about a year that I felt a need to try it again and have done well using just a little (it tends to build up in the tissues, so using too much is a common problem).

Finally, after you've gotten optimized on estrogen and progesterone, and given your body plenty of time to adjust, THEN and only then is it possible to look at whether or not you might need testosterone. Again, not everyone does. I would not recommend even considering it until you are at least six months post op. At this point, your body is still adjusting to losing your ovaries, and how you feel now is not how you will feel in six months.

If you decide to consider testosterone, your DR should run serum levels of free and total testosterone as well as liver function and lipid profiles. The reason is because it's very easy to overdo it with testosterone, and too much testosterone can cause some rather nasty and hard to get rid of symptoms. Also, using testosterone is hard on the liver (especially if it's taken orally) and women with cholesterol problems are not good candidates for using it.

I started using compounded testosterone cream at six months post op and used it for a couple of years, less and less over time. For the past couple of years I have not needed it at all, although I keep some around just in case. Apparently my body is now making enough for my needs from the progesterone (yes, we can do that even without ovaries, though not as efficiently).

So... HRT is not a "quick fix" situation. It is a process that takes time, sometimes tons of it. It is trial and error. It is not automatically throwing out one possible solution, only to find that the one you wanted to work does not. Perhaps you'll get lucky and find your balance fairly quickly, but most women do not.

You'll do what you feel comfortable with, but I would not recommend attempting to "strong-arm" (your words) your doctor into doing what you want. If you don't have confidence in what your doctor's experience and knowledge suggest, then find a different doctor, but having no respect for your doctor's skills isn't going to work out for you in the long run. It should not be necessary for most women to find an endocrinologist just to balance HRTs; my ob/gyn is still prescribing mine after all these years.

And bio-identicals are great - they're my choice, and they work for me - but they may or may not feel best to you once you actually use them. We have had quite a few women give up on them and go back to Premarin or another non-bioidentical HRT because that was what worked. Go with whatever works for you but know that just because something works for me, that does not mean it'll be best for you. HRT is definitely not "one size fits all".

I hope this helps.

s,
-Linda

[quote=surferbabe;3233790]
You'll do what you feel comfortable with, but I would not recommend attempting to "strong-arm" (your words) your doctor into doing what you want. [quote]

*laugh* Actually Linda, that was the nurse's words (or maybe she said "throw-down"?) the last time I was in the office.

My doctor and I have had passionate discussions before, and it has worked out well in the past. It is just that sometimes, he needs to know how passionate I am about something before he realizes that I actually have done some research on the subject that he's trying to get me to "not worry my pretty little head" about. Not that he says in in so many words, he is actually a very respectful doctor, very experienced, and knowledgeable, but sometimes I wonder if most of his patients aren't of the type that treat their physicians as if they are gods and never question them. I'm sure we all know the feeling. :P

Linda, Can't one just start on what the average woman's body produces as a normal balance and then adjust from there every few weeks until she finds her own individual proper balance?

I thought that's how this worked?

Just got back from the doctor's office. While he's had a lot of experience with Endo, his experience is mostly that if a woman has Endo, she should have her ovaries removed. *sigh* So he really didn't KNOW about Endo specialists, the ability to get it all with one or two simple procedures, or whatnot. But he did the best that he could with the information he had, and the only real mistake I can even come close to saying that he made was not making it clear to me that there was a very strong possibility that I had endo or that other thing that acts a lot like it, which would have allowed me to actually do some research and go into the surgery better informed.

I also talked to him about why, 6wks ago, my body needed the hormones that it was creating, but now, somehow I needed less than that. He told me that I could replace whatever of my hormones that I wanted to, and that was up to me, not him. (This was after I explained to him that I wanted the Progesterone because it decreased the rampant cell growth that is caused by Estrogens, and thus would decrease the likelihood of a recurrence in my Endo).

He referred me to a pharmacist who would be more able to answer some specific questions that I had, and that pharmacist referred me somewhere else after answering all of the questions for me that she could.

I now have all of the information that I need, but am not really any closer to a solution for my concerns.

All I know is that I am now, and will forever be, without my ovaries, and if I want to be a healthy young woman, I will need to take replacement hormones at least for the next 10 years or more.

Hopefully, I'll figure all this out before the end of the week, and if I'm REALLY lucky, my insurance will cover most of what I need to get to keep my body in proper working order.

Here are a couple things to think about. When our body is creating its own supply of hormones, it can adjust to our body's needs. For instance, when one exercises, there is a need for more estrogen. Our bodies are pretty brilliant and can automatically adjust for our activity level. When using HRT's, that doesn't happen. The same dose is used day in and day out no matter what our daily life might be dictating.

Additionally, there isn't exactly a "normal" level of hormones for each woman. For one, everyone feels differently even at the same levels. Also, as I mentioned, our bodies adjust our hormones based on our body's needs. There really isn't an average normal as it depends on symptoms, overall health, age, size of the woman since body fat can produce and store estrogen, whether or not any endo has been left behind that is producing estrogen, how well your body is converting the various hormones, diet, how your body uses the specific brand of hormone and delivery system, on and on and on.

When we are creating our own hormones, our levels are not the same from day to day nor even hour by hour. HRT is not going to allow your levels to fluctuate to accommodate your daily needs. Instead, you have to find a compromised level that will hopefully allow you to feel well overall.

Hopefully the doctors and pharmacist you have been referred to will help you through this jungle! Remember, it is going to take patients, perseverance, and trial and error! There is no one size fits all solution and having an endometriosis diagnosis already throws a kink into the works for you!