scared - hysterectomy with no real diagnosis

I have always had irregular periods and have had pain with intercourse over the past several years. In 1999 I had a laparoscopy finding nothing. I was on the pill for many years and got tired of having irregular periods and spotting throughout the month. So two years ago I started on the Depo Provera shot. A year and a half ago I started having cramping after orgasms. My Gyn told me that was normal. Then this summer I started having three weeks of spotting. Up until then I had very little spotting since being on the shot. Around this same time my orgasms became very painful. I started waking at night with uterine pain and would have sporadic cramps throughout the day, not always with spotting. One night I woke up and even though I've never had children, I imagined that what I was having was a contraction. It lasted 15 minutes! Needless to say, my DH and I have greatly reduced our intimate times together. I had another laparoscopy in December with no findings, an ultrasound with no findings, and three Gyn opinions. They can't find anything. One mentioned that I could have adenomyosis and another mentioned I would only have a 5% chance of any hormone treatment working. So it's been suggested that I have a hysterectomy. I'm okay with not having any children of my own. What scares me is having major surgery with no real diagnosis. Has anyone else experienced anything like this? If so, I'd love to hear from you!
Christy

Hi Christy........I have endometriosis and have pain with intercourse and pain after as well, get cramps at weird times, even when not on my period......but if you have had tests done, I would think they would have found it.........Best wishes to you and if you are unsure, I would get other opionions if you can.........I will be thinking of you, and hope you find the answers you are looking for!!!!!

Apparently adenomyosis is hard for some drs to diagnose pre-op. I was diagnosed via internal ultrasound for adeno. I don't know if it's the dr's experience, or maybe the Lab person's experience or maybe it's the type of testing? I had cramping every day. Spotting, and intercourse hurt when it was too deep. Irregular periods that were heavy some months, then light the next, always with big clots. Dark purple blood mixed with the bright red blood accompanied these also.
Back pain, leg pain, and of course the uterus was large. I also suffered urinary incontinence because of it. There is no cure or treatment for it other than hysterectomy. I was a very moody woman. It's all fixed now, in fact I don't even have the "very bad PMS" I used to suffer. I had this operation not knowing if it would fix the incontinence, possibly facing more surgery. I was very nervous, but it's all worked out. Good luck to you.

Hi Christy, Your situation reminds me of my own. A couple years ago I started having irregular,heavy periods and painful cramping which I thought was attributed to getting older....I turned 40 in July. I finally said something to my Gyn after having my bladder repaired in May.He explained what he thought may be happening and suggested a DNC. He performed the DNC and found a thick uterus which could possibly be endometriosis, but he wasn't 100% sure. Since I have high blood pressure any sort of hormone therapy,etc wouldn't be a good option for me so he suggested a Hysterectomy. I am excited to feel better and have this all behind me. Please feel free to send me a private message if you would like to chat somemore. Best wishes to you! Melanie

Hi Christy!
I am scheduled for my hyst. in March with similar circumstances. I had a lap. a few years ago with no endometriosis found. I let it go for a few years but found that things got progressively worse, cramps increased, pain during intercourse etc. I tried the hormones etc. The doctor feels that because it is not an issue of heavy bleeding, the only option is the hsyterectomy. He thinks it's likely adenomiosis but does not feel it would be beneficial to run a bunch of tests at this point. Regardless of those results, the hsyterectomy would be the only fix. I am looking forward to the relief! Good luck!

Laura

I had a lot of pain also, though not with intercourse. My doctor didn't know for sure if I had endo, but with my symptoms of heavy bleeding and cramps, he was pretty sure I did. Wanted to get rid of the ovaries also, because of my hormonal headaches. (I haven't had one migraine since my surgery!!) It ended up, that I had a lot more than just endo. Good luck with making your decision, it is hard not knowing.

Hi Christy. I'm so glad you posted this. I also have pain with intercourse and orgasm (for about 8 years now) and how strange is that and what in the heck would make your body do that???!!! I have yet to figure it out and I have asked the Dr. but no real answers. I am having hysto for lots of bleeding. Not necessarily heavy bleeding, but just lots of it...3 week period every month, or 3 periods in a month or whatever the stupid thing decides to do. I have been to 3 GYNs, 2 urologists, switched family doctors even in the last 8 years with no relief so this is my final answer and I am a happy patient. Not even a wee bit nervous, just looking forward to having a normal life again, though at times I have trouble recalling exactly what that might be!

I didn't have adenomyosis. However, even if you have your uterus removed, you don't need to have your ovaries removed unless they are diseased. So if you don't have the ovaries removed, you will most likely not need HRT after surgery.

I hope others will come along who have had something closer to your experience to give you some additional insight.

Hi Christy

You poor dear. I’m sorry they haven’t found answers behind your suffering. How frustrating. As you already know, adenomyosis is usually a presumed diagnosis, so many women who deal with it walk down a similar path to the one you are on now. Many have severe cramps and pain or bleeding issues, but symptoms do vary. It’s true that hormones usually don’t work with adenomyosis, but without a definite diagnosis it’s a good idea to try all the options first – because adeno or not – something might work. Although her symptoms aren’t the same as yours, one of my sisters is about your age, also with no children, and her periods have almost stopped with the Mirena IUD.

There are many possible causes of painful intercourse(dyspareunia). Some women with a retroverted (tipped-back) uterus have pain during intercourse. Athough it's usually not considered to be of significance, you might ask about the position of your uterus to see if this could be adding to your discomfort.

I’m not suggesting your pain isn’t GYN pain, but just to cover all the bases…have any of your docs investigated your GI tract or urinary tract? The pelvic nerves can send confusing signals. Bladder pain and bladder spasms (from infection or just irritation) can sometimes be confused as uterine pain and can be terribly, terribly painful. There is a chronic bladder condition called Interstitial Cystitis that can sometimes cause painful intercourse too. Sometimes a tricyclic antidepressant can help relieve pelvic pain. (Not given for depression, but the ability to sometimes combat pain signals from nerves.)

One final thought for you is that some women in your situation benefit from seeing a pain management specialist. These docs are usually very compassionate people. A pain management specialist can review all your records and history with you with a fresh pair of eyes and see if something might have been overlooked. Even though you’ve had multiple gyn opinions this route might at least shed some light on your situation or possibly tell you whether a hyst might help or not. They can give injections to try and block the pain. This can have the added benefit of mapping (locating) the origin of the pain. As mentioned above, the nerves of the pelvis can send confusing signals. The way I understand it, if the nerves to the uterus are blocked and you continue to have pain, it might be coming from a surrounding source, so a hysterectomy might not even help.

Again, I’m so sorry they haven’t’ found the reasons behind your symptoms and suffering. Most adenomyosis is diagnosed after hysterectomy pathology, but for some women the cause of their pain is a mystery even after their hyst.

I'm including some links for you here, but several others can be found in our Resource Section too.

Interstitial Cystitis

Adenomyosis

Mirena

Dyspareunia

Hysterectomy recommended to you?

Sending lots of s your way. Whatever you decide to do, you won’t be alone. We’ll be here for you.
Beth

Thanks to all of you for your words. I go to the doctor in a week to talk about surgery and to set up a date. I had one doctor say that sometimes they just aren't smart enough to know all the ways in which the uterus works (or doesn't). I'm just looking forward to not having any more pain. Thanks again!
Christy