Female issue-advice desperately needed!!

[ThatCyndiGirl]

My level of desperation about this has reached a fever pitch. Here is the situation: For the past few years, the first two days of 'punctuation' have been horrendously painful. Pain sears through my lower right pelvic area (ovary-ville), down to my right thigh, and through to my back. When I tell you that it is HORRID pain, I am not kidding. My last child was born in water in my backyard, sans drugs obviously. I can handle pain, but labor pain was different as it was self-limiting and served a purpose.

 

This pain has me writhing and rolling around on the couch or bed and one month I could see the terror in my oldest daughter's eyes. A few months ago I was given Naprolen, which has helped to dull the pain just a bit, but it is still intolerable. My short-term wish while it is happening is, "Just knock me out till this is over". For the past couple of months I have been training for a triathlon. For one week of every month my training is completely de-railed due to this pain.

 

In the past year there has been a shift from "first two days of punctuation" to now "first THREE days of punctuation" and the pain has amped up as well.

 

I have had a shockingly thorough pelvic exam and a clear ultrasound. I do believe that I am probably in peri-menopause due to sleep disturbances. (If any of you have read any of my middle-of-the-night Ambien-induced Facebook posts,....now you know why!)

 

I have always been opposed to routine hysterectomies. Now, mind you, I don't mean 'judgmental of those who HAVE them', but rather judgmental of the medical profession that it is so common/routine. I say that only to let you know how shocking it feels that my outlook is beginning to shift. When I am in this agonizing pain all I can think is that I would be willing to perform my own hysterectomy in my bathtub with a sharp safety pin and a slotted spoon! I am dismayed that, at this point, if a medical professional suggested a hysterectomy, I would likely sign the consent form while kissing said Dr.

 

So, last week I decided to ask my Dr for BCPs. (My husband had a vasectomy 2 years ago, so it would be for MY hormonal benefit only.) Nuvaring caused a shocking and uncharacteristically low libido. No other side effects, though.

 

My Dr. wasn't in the other day, but her brother was. Now in the past I have really liked him, but his actions on Wednesday lead me to believe that perhaps he hates women. He prescribed Jolivette, the BCP that has the reputation for causing heavier, more frequent, and much more painful 'punctuation'.

 

Nice.

 

(I should add here that my Dr's brother is also a Dr. It's not like he is just some pesky kid brother with a prescription pad!)

 

I talked to DH about it last night and told him that I am becoming ALARMED at my level of desperation about this. It is getting to the point where I SO COMPLETELY DREAD punctuation. I wish I could LITERALLY run away from it.

 

I have deliberately scheduled the triathlon I am doing for a non-punctuation time, but still I have this worry that I have done all of this work only to be derailed on race day by what now really DOES feel like a curse.

 

What would YOU do in this scenario?

 

If you have read all of this....thank you. I am willing to try anything except heat. I don't do heating pads or hot baths. Heat while I'm in pain makes me vomit.

 

Triathlon date is August 14.

 

Oh, and btw, I have lost 70 pounds and I've noticed that since exercising religiously and losing weight the pain has actually gotten MUCH worse. :confused:

[Julie Smith]

Sorry, no advice. But I'll bump your post in hopes you will get some.

[Parrothead]

What would YOU do in this scenario?

 

 

I would make an appointment with my gyn and talk about the possibility of having endometriosis. What you describe sounds just like the hideous horrible pain I had (ended me in the ER once for pain meds) when I had endometriosis.

[livingnlearning]

When I was in your shoes I got a hysterectomy!

 

Ablation procedure maybe?

 

I've been out of the BC game for a long time but there must be some variations that are a help in this situation?

 

You might also consider some hypnosis, self-calming techniques (or meds!) b/c I know anticipating the pain can make it worse.

 

I'm sorry you have to deal with this!

[Disney Dreaming]

:grouphug:

I am in the same boat. I have had cysts rupture and now I'm having the same pain you describe the day before and the first day of my "punctuation". My gyn says I need to have a hysterectomy and remove my ovaries. I am trying to hold off until I cannot take it anymore. The heating pad does give a little relief if you can do so without vomiting.

[emeraldjoy]

I have seen my sister through something similar. :grouphug: and I am so, so sorry. What a rip off for a week of your life...every.month!!

 

It does sound like endometriosis. If this is the case then there are things that can be done before the hysterectomy.

 

e

[gardening momma]

I have always been opposed to routine hysterectomies. Now, mind you, I don't mean 'judgmental of those who HAVE them', but rather judgmental of the medical profession that it is so common/routine. I say that only to let you know how shocking it feels that my outlook is beginning to shift. When I am in this agonizing pain all I can think is that I would be willing to perform my own hysterectomy in my bathtub with a sharp safety pin and a slotted spoon! I am dismayed that, at this point, if a medical professional suggested a hysterectomy, I would likely sign the consent form while kissing said Dr.

In your case, I would not consider it to be a "routine" hysterectomy. I would seriously consider it.

[Murphy101]

I'm presuming no definitive dx was available as to cause?

 

Ablation seems to help many people for some reason.

 

Idk.

:lurk5:

 

I was having the same symptoms before this pregnancy. Never really had cramps at all for most of my life. But wow. The beginning of my cycles before this previous pregnancy were terrible mood swings and horrid stay in bed all day cramping. That brief time each month for 6 months before pregnancy was way worse than the first 6 months of pregnancy.

 

I'm really dreading that in coming months. It seems to be something that's just related to aging?

 

I really wouldn't want a hysterectomy either and I can't have BCP for medical reasons. It's convienent for me that is in line with my religious views, but regardless its not an option. No reputable responsible dr should give me an RX for it given my very bad reactions to it in my younger years.

 

But the pain was pretty bad. Same as you describe. Stabbing searing pain wrapping around my lower back, one side of ovary-ville, and down a hip.

 

I hope you get some healthy relief from it soon without major surgery.:grouphug:

Edited June 25, 2011 by Martha

[livingnlearning]

I'm pro-hysterectomy and I DO think they should be routine. I think as soon as child bearing is over a woman should have the option to be done with the whole mess and the procedure should be perfected to the point it can be done in same day surgery! LOL

 

I don't miss my plumbing one. little. bit.

[Murphy101]

I'm not against hysterectomy if it is truly a medical need.

 

But myself and many others don't like the idea of making it routine bc often it can be trading one discomfort for another. I've seen my sisters and other relatives who got routine hysterectomies have major related issues over the years. There are problems associated with hysterectomy that I would like to avoid entirely if at all possible, or at least for as long as possible.

 

Not arguing with anyone really. Just saying why some might not be as comfortable with it as others.:)

[kalanamak]

I would make an appointment with my gyn and talk about the possibility of having endometriosis. What you describe sounds just like the hideous horrible pain I had (ended me in the ER once for pain meds) when I had endometriosis.

 

And it does not always show on ultrasound.

 

If you are regular, try taking the over the counter dose of Naprosyn twice a day for the three days BEFORE your . begins, and then full dose at the first hint of cramping. Mine were floor-rolling, vomiting and diarrhea before I learned this trick from the Merck Manual, of all places.

:grouphug:

[Dandelion]

I had a horrible, horrible time with this during my teenage years. Knocked me out for three days every month (severe cramps, vomiting, had to miss school, etc.). I know how you feel, and it's awful. :grouphug:

 

BC ended up taking care of it for me. Perhaps a different type of BC might help (how about the BC pill that leads to only one period every 6 months?).

 

Also, if you're open to natural remedies, I discovered a website about 6 months ago where people from all over the world post various natural remedies (folk medicine) for all kinds of ailments. I've tried several of them already (for both myself and the kids) and have seen great results. I just checked and they have quite a bit posted on this topic. The direct link to the "Ailments" page is http://www.earthclinic.com/ailments.html - click on "M" for Menstruation. Might be worth checking out before you consider more drastic measures.

 

Hope you find something that works!

[emeraldjoy]

And it does not always show on ultrasound.

 

If you are regular, try taking the over the counter dose of Naprosyn twice a day for the three days BEFORE your . begins, and then full dose at the first hint of cramping. Mine were floor-rolling, vomiting and diarrhea before I learned this trick from the Merck Manual, of all places.

:grouphug:

'

yes, this was recommended for my sister....and she had the vomiting, diarrheah, etc symptoms. It worked if she was charting and knew when to start. She since has had a baby and that "healed" her completely.....pregnancy is also a suggestion for endometriosis (if the preg. can actually happen)...not sure if this is in the cards for your though?

 

I would also like to second that most often it does not show up in an ultrasound...it is symptom diagnosed or surgery diagnosed (as in my case).

e

[thessa516]

Ask your doctor about the NovaSure procedure. I haven't had it done, but I've heard very good things about it.

[Random]

It does sound like endometriosis, but I can't imagine your GYN wouldn't have already talked to you about that.

 

How is your thyroid functioning? Any talk of PCOS from your doc? Or, the Mirena IUD?

[ThatCyndiGirl]

Thank you for all of the replies!

 

Endometriosis was discussed as a possibility, but I thought that a laparoscopy was the only way to diagnose that? One reason that I'm so anti-hysterectomy for me is that the healing would de-rail training, too. Of course, I could take some time off in the winter, I guess, if it comes down to that.

 

I WILL start taking the Naprolen a couple of days before. In the past I would take it when the pain started. After a lot of reading online last night I discovered that this is NOT an effective way to use it. It needs to be dosed regularly BEFORE the pain becomes bad. Taking it AFTER,...I was unable to get on top of the pain. It was like I was always trying to play catch-up. Yes, I am regular. My teA craving gets so strong a few days before that DH starts to look scared and ends up dehydrated. :tongue_smilie: (Welcome to TMI. It's scary, but you may like it here.)

 

I will talk to my Dr again about Novasure, endometrial ablation, etc. Other triathletes have mentioned having ablation and being back to lighter training in a week. (lower mileage, etc.)

 

Although I have lost 70 pounds I still have 60 to lose. I'm 5'4" and weigh 180. (I can't believe I just said that!! I started out at 250.)

 

For three weeks of every month I try to just pep-talk myself into that other terrible week. "It's gonna be fine. Just suck it up and deal" and then it hits and I'm like, "WTF WAS I THINKING?!?!?! CUT IT OUT OF ME!! CUT IT OUT OF ME RIGHT THIS INSTANT!!!"

 

 

Yes, I do have PCOS and my thyroid is fine. I'm afraid of the Mirena due to cost. I would have to spend $1,000 and if it is a bad fit for me then more money to take it out. Too much risk with a questionable reward. More and more of my money is going toward Tri stuff these days (race fees, USAT membership, accessories. I can't imagine spending $1,000 on a big ol' question mark, kwim?)

Edited June 25, 2011 by ThatCyndiGirl

[justamouse]

I have no advice, just :grouphug::grouphug: that must be awful.

[livingnlearning]

Thank you for all of the replies!

 

Endometriosis was discussed as a possibility, but I thought that a laparoscopy was the only way to diagnose that? One reason that I'm so anti-hysterectomy for me is that the healing would de-rail training, too. Of course, I could take some time off in the winter, I guess, if it comes down to that.

 

I WILL start taking the Naprolen a couple of days before. In the past I would take it when the pain started. After a lot of reading online last night I discovered that this is NOT an effective way to use it. It needs to be dosed regularly BEFORE the pain becomes bad. Taking it AFTER,...I was unable to get on top of the pain. It was like I was always trying to play catch-up. Yes, I am regular. My teA craving gets so strong a few days before that DH starts to look scared and ends up dehydrated. :tongue_smilie: (Welcome to TMI. It's scary, but you may like it here.)

 

I will talk to my Dr again about Novasure, endometrial ablation, etc. Other triathletes have mentioned having ablation and being back to lighter training in a week. (lower mileage, etc.)

 

Although I have lost 70 pounds I still have 60 to lose. I'm 5'4" and weigh 180. (I can't believe I just said that!! I started out at 250.)

 

For three weeks of every month I try to just pep-talk myself into that other terrible week. "It's gonna be fine. Just suck it up and deal" and then it hits and I'm like, "WTF WAS I THINKING?!?!?! CUT IT OUT OF ME!! CUT IT OUT OF ME RIGHT THIS INSTANT!!!"

 

 

Yes, I do have PCOS and my thyroid is fine. I'm afraid of the Mirena due to cost. I would have to spend $1,000 and if it is a bad fit for me then more money to take it out. Too much risk with a questionable reward. More and more of my money is going toward Tri stuff these days (race fees, USAT membership, accessories. I can't imagine spending $1,000 on a big ol' question mark, kwim?)

 

I'm certainly not trying to talk you into a hysterectomy, that's a personal decision and everyone needs to figure out what's best for their own health. For me, I was more than happy to run the marginal risks of the surgery and not have ongoing medication and BC issues.

 

But I wanted to reference what you said about training-I don't run (though I should) but we do pack trips with the horses into the mountains all summer and fall, usually every weekend. I chose to have my surgery in the winter so I would be ready to go the next summer and it worked out perfectly. I had a major surgery in part to also repair some adhesion problems so a much longer recovery time than most and I was still up to full speed within a few weeks. Now instead of missing out on that fourth week every month I can go to the mountains all summer/fall, my physical health is much better I think b/c it's consistant-before I had a week where I couldn't walk, ride or run; now I can do that every day of my life. I was more than happy to sacrifice a few weeks in a row to gain back all those weeks that I would have lost without the surgery.

[pfamilygal]

I'd ask for an exploratory laparascopy to see if it is endometriosis.

 

I had six laps for endo and one round of Lupron before I had my hysterectomy in February. I'm so glad I did. No agonizing pain any more!

[Kim in Appalachia]

I would make an appointment with my gyn and talk about the possibility of having endometriosis. What you describe sounds just like the hideous horrible pain I had (ended me in the ER once for pain meds) when I had endometriosis.

:iagree:

 

My sister suffers from this, and it is awful. She is also thinking about a hysterectomy, but that does not guarantee stopping the edometriosis! She just started try a BCP where she will only "cycle" 4 times a year. She has had multiple surgeries and has tried other pills, but the pain can be hard to bare at times.

:grouphug:

 

Keep on your Dr to find something that works.

[Green Vixen]

Hi,

 

Just another thought, could they stop your period until after your triathlon in August, then have a Laporoscopy during your off season? I believe there are different BCP that only give you a period every 3 months that may work? I would speak to your normal GYN and see what she thinks. It sounds very painful and a Lap sounds like it is in order. (((Hugs)))!

 

OT: Why aren't we using the word "period"? I think we are all adults here and you did post that this was a female discussion? Not being snarky just curious :-)

 

Marisa

[elizabeth]

I just had two iron infusions and am preparing to have a D and C in lieu of biopsy and endometrial ablation for heavy periods. The pamphlet for the endo says Imagine the freedom. Hell yes I can imagine the freedom. My MD let me choose begtween hysterectomy or ablation. I am opting for the more conservative approach although the dumb uterus could be used for a tree topper or paper mache art ....talk about useless .

[Mommy22alyns]

Sorry, I have no advice, but I'm sorry you're having such pain. :grouphug:

[alisonf3]

I'm so sorry you are going through this! I have been experiencing the same symptoms from the time I turned 30 (3 years ago). I also had incredibly heavy flow for 3-5 days that was so bad I couldn't stand up for more than a few minutes at a time. Not easy to manage with kids! My GYN wanted to try Lupron but before I did I was recommended to see a Reproductive Endocrinologist and I am so glad I did! I have noticed a huge improvement the last 6 months although I can pretty much guarantee anything planned for the last thursday of the month will have to be cancelled due to pain/flow issues.

 

I, also, have PCOS and he put me on the bc Desogen. I actually take the generic form called Reclipsen. It is strange, but the two generics and the original med seem to be different. I have taken all three and they each had unique side affects. Reclipsen is the only one I can tolerate. He also gave me an antibiotic that I can't remember the name of right now. I took it for the 7 days prior to the start of my period two months in a row. It made me VERY nauseated, but after two rounds the third month was much better. I can't remember his reasoning for that but I was willing to try anything!

 

I hope you get some answers!

[Just Beachy]

OP, I'm sorry you are going through this. I started having problems after my youngest was born and they became progressively worse. I lived with it for a long time thinking it was normal. It wasn't until the pain was so bad that I almost passed out one night and ended up waking and scaring my oldest dd that I decided I needed to do something about it.

 

You mentioned that you had an u/s. Was it just a regular one or was it a hysterosonogram where sterile water was used to help enlarge the uterus? I ask because I ended up having a huge polyp that didn't show during a regular ultrasound.

 

I ended up having the polyp removed and having an ablation. It is a very quick recovery. I was up and running errands the next day, and things have been so much better since.

 

Have you ever been www.hystersisters.com? It is a very informative site and I learned a lot there. It does tend to be pro-hysterectomy, but I think that is because many of the women there weren't able to be helped by less invasive means. There is a section for alternatives though.

 

Good luck to you and also on your training.

 

:) Beachy

[mhg]

I don't know if I'm echoing as didn't read all the posts, but

I'd talk to my gyn about ruling out adenomyosis.

 

Endometriosis is associated with the 3 D's:

1. dysmenorrhea (painful periods)

2. dyschezia (pain during bowel movements)

3. dyspareunia (pain during intercourse)

 

Ladies with endome. often have all 3, with 1 being much more obvious.

 

You sound like you have adenomyosis more than endometriosis.

Here's a brief description:

http://www.bing.com/health/article/mayo-126324/Adenomyosis?q=adenomyosis

 

I wouldn't yank my uterus out without establishing a diagnosis. The uterus still contributes to libido/bone health (even after menopause) and also provides pelvic support, so --- I'd rule out other causes and try to treat what truly is wrong FIRST before considering the hyst.

 

Best wishes!

[ThatCyndiGirl]

Hi,

 

 

OT: Why aren't we using the word "period"? I think we are all adults here and you did post that this was a female discussion? Not being snarky just curious :-)

 

Marisa

 

 

I started saying 'punctuation' years ago with DH and we thought it was funny and it stuck. I really don't care if people say 'period'. :lol:

 

I WILL ask about suspending it until August. (I'm looking at another one in September, but it involves a trail run and I'd hate to just end up crawling into a hollow log and crying.)

 

 

mhg, numbers two and three don't apply, it is only the painful periods. I'm off to read your link.

[ThatCyndiGirl]

I just had two iron infusions and am preparing to have a D and C in lieu of biopsy and endometrial ablation for heavy periods. The pamphlet for the endo says Imagine the freedom. Hell yes I can imagine the freedom. My MD let me choose begtween hysterectomy or ablation. I am opting for the more conservative approach although the dumb uterus could be used for a tree topper or paper mache art ....talk about useless .

 

 

This just cracked me up. I can imagine the freedom as well! :lol:

[craftyerin]

endo can also be largely asymptomatic. I had only mildly painful periods (nothing a normal dose of advil couldn't handle), no painful sex or bowel movements, but after 18 mos of infertility, my RE suggested a lap to look for endo. Sure enough, stage 2. I'd look into it for sure, if I were you. So sorry you're dealing with this!

[UmMusa]

I'm 36 and started having a lot of pain starting around age 30. I am so comforted knowing this is not so uncommon. After reading that link I will talk to my doctor about the adenomyosis for sure.

 

My GYN told me to start Advil every 6 hours (600mg) 2-3 days before I start my period and to continue til day 5. My severe, contraction-like pain always comes in the morning of day 4. Isn't that weird? Once I pass that day I'm fine. This past month I suffered for 6 days before my period even started by feeling lethargic and generally unwell. I was complaining to my mom how my month is dramatically divided into a 2 week menstrual stage and a non menstrual stage. It's very hard to live with.

[tex-mex]

I'd ask for an exploratory laparascopy to see if it is endometriosis.

 

I had six laps for endo and one round of Lupron before I had my hysterectomy in February. I'm so glad I did. No agonizing pain any more!

:iagree::grouphug::grouphug:

[tenoraddict]

First, let me say, "You go, Girl!" on your weight loss and triathalon training! When you said that you don't do well with pain and heat together...and that your triathalon is in August...what were you thinking scheduling that even in August?! ;) Seriously, though, keep up the good work.

 

Endometriosis is different for everyone. A severe case can present no symptoms and someone in extreme pain can end up with only a mild case. Yes, it's only diagnosed by laparascopy. As someone who's had diagnosed endo for 17 years (and undiagnosed for probably another 10 before that), I can tell you that I agree with the other Hivers that it sounds like endo...and/or maybe a mighty ovarian cyst (I've had those, too). I suggest that you consult a specialist (reproductive endocrinologist), or at least ask your gyn to order a pelvic ultrasound (with a transvaginal view as well). This will at least rule out or confirm cysts.

 

When I had my 2nd lap in '94, my Dr. severed the ligament that causes cramps. It was a beautiful thing and I named my dog after him (not really, but I was tempted). No more cramps. I recently had my left ovary removed (my endo has always been on the left side), and it's made a huge difference in the amount of bleeding. Some things to keep in mind if surgery is in your future.

 

Yes, perimenopause is going to mess up your cycle. I've had a couple of 14 day ones this year. Yay! They were followed by 35 day cycles! Even worse! There's not a lot we can do about how the aging process messes with us, but there are some homeopathic remedies that can provide relief for mood swings, hot flashes, etc.

 

By the way, the "punctuation" cracks me up. :lol:

[Robin M]

Haven't read any of the other responses, but my gyn dr gave me nora-b which stopped my periods entirely. Ask your doctor to prescribe those or ones that don't have placebo during the 4th week.

[texasmama]

I wonder about endometriosis, as another poster said. I am middle aged (44) and have heavy punctuation (hehehe), as well, but I have almost NO pain. I think pain is abnormal, particularly to the degree that you are enduring it. (Not that you don't already realize this.) I wonder if laparascopic exploratory surgery could uncover the cause of your issues.:grouphug:

[celticmom]

I have had problems with endometriosis in the past. One thing that was very helpful for me was to eliminate all caffine from my diet.

[Cheryl in NM]

What would YOU do in this scenario?

 

If you have read all of this....thank you. I am willing to try anything except heat. I don't do heating pads or hot baths. Heat while I'm in pain makes me vomit.

 

Triathlon date is August 14.

 

Oh, and btw, I have lost 70 pounds and I've noticed that since exercising religiously and losing weight the pain has actually gotten MUCH worse. :confused:

 

My endometriosis and adenomyosis did not show up on any of the several ultrasounds I had. My doctor finally did a total, complete hysterectomy. I still struggle with hormone balance issues, but I was struggling with those before the hyster. The pain you are describing is the kind of pain I had. During the first few days of my "." it hurt to urinate. I thought I was going to pass out during a bm the paid was so bad, my field of vision would go black, I wasn't constipated.

 

My only advice would be to see another doctor. They found nothing on any medical tests before the hster and they only biopsied a very small portion of my uterus. They never did find out why I was in such pain. The endo was fused to my bladder, but they got it all. The decision to have a hysterectomy is not one to be made lightly and it's not the end of all your problems, just the pain you are currently experiencing.