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New- Pelvic Muscle Spasms & Chronic Pelvic Pain

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Chronic Pain
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Bear Town Girl
New Member
Joined : Nov 2014
Posts : 1
Posted 11/7/2014 12:48 PM (GMT -7)
Hello All! I am new to the forum, but have been dealing with pelvic pain for about 4 years now.
Here's my story:
When I was 21, I experienced extreme pain in my left lower abdomen (ovary area) after intercourse. I went to the ER where they told me I likely had a cyst rupture, and to see my obgyn. I was basically bed ridden the next day, and most of the day after that- to this day that was the worst pain I've ever experienced. My obgyn told me I had PCOS, and kept me on a birth control pill (I have been on the pill since I was 16). After a few months of pain (during & after intercourse, during my period & just randomly sometimes) she said I had to take my ovaries out. Obviously I told her she was a crazy person and I was not letting her take my ovaries at age 21! I then went to another obgyn and he changed me to a higher hormone pill. The pain was more manageable for awhile, but still there.
At that time I moved cities & started seeing a new obgyn in my area. She told me about the correlation between PCOS and insulin levels, and immediately started me on metformin. I took it for a few months and was absolutely MISERABLE. It gave me terrible stomach cramps, made me have diarrhea constantly, and just overall made me feel bad. I got fed up and officially went to see a specialist.

My specialist was fantastic, and within 10 minutes of meeting him & answering basic questions, he said I never had PCOS! He did an ultrasound & saw that I had a large cyst on my left ovary, and wanted to monitor it. After a few months on a new BC pill, the cyst dissipated, but I was still having terrible pain, especially during intercourse. He suspected endometriosis, but didn't want to cut me open just to verify it. He also suspected there were some other items at play, and referred me to a Pelvic Pain Specialist in his hospital.

My pelvic pain appointment was yesterday, and I got my third and hopefully last diagnosis there. I am still trying to understand all of this, but I was told I have Pelvic Muscle Spasms & Chronic Nerve Pain. I have done some research and I guess the nerve pain means Neuropathic Pain; i.e. my nerves are telling my brain that I have pain, when there really isn't anything physically wrong. She is prescribing me a tricyclic amitriptyline- Elavil to help with my chronic pain, and sending me to physical therapy for the muscle spasms. Other than the first cyst rupturing or twisting, I've never had any traumatic experiences or pain that might have caused the chronic neuropathic pain now. I guess I'm glad that it's not cancer, or something terrible that could cause me to not have kids someday, but I'm also struggling with it a lot because I feel like I'm going crazy. How can I have pain that's not really there? Is it all in my head? What the hell does neuropathic chronic pain mean?

I am engaged to a wonderful man who has been by my side from day one (we've been dating 6 years), and we are getting married in June. I want to start our marriage on a happy, clean slate- and not be in pain every time we have sex. I have sex with him just because I love him and I want to be intimate with him, but honestly most of the time I'd rather not because it's just so painful.

Also, I am very nervous about starting the Elavil medicine- I've never been on any sort of antidepressant like that, and my doctor told me the first few weeks can be rough while my body adjusts. I've also read a lot about having suicidal thoughts & mood swings while on it, and frankly that scares me!

Has PT helped anyone? What about acupuncture, pilates, etc?

I am wondering if there is anyone else that is in a similar situation as me, or if anyone has taken a amitriptyline medicine for chronic pain. Any info/stories/etc would be so appreciated right about now!

Thanks!
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Backtolife
Veteran Member
Joined : Aug 2014
Posts : 819
Posted 11/7/2014 2:18 PM (GMT -7)
Welcome to the forum ... there are quite a few of us who suffer from chronic pelvic pain, myself included.

Have you ever read anything about pudendal neuralgia or pudendal nerve entrapment? It is one cause of pelvic pain that is under diagnosed and not understood by most doctors.

If that medication helps you though, you'll at least have a clue that it is a nerve issue. And it IS all in your head - only not in the sense that you're making it up. It's just that your nerves are over-sending signals to your brain. It sucks. Really, really sucks.
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Dixie6
Veteran Member
Joined : Aug 2014
Posts : 1022
Posted 11/7/2014 3:42 PM (GMT -7)
Hey BT Girl...I'm not convinced you should "start" Elavil...I absolutely believe you have endometriosis.  Did this "specialist" perform a laparoscopy for diagnosis?  If not, he/she doesn't know what the hell they're talking about.  I'm sorry, as this enrages me, but it's standard practices for women in pelvic pain...blow them off, tell them it's in their head!  It's an outrage.  I'm going to step away, count to 5, breathe deeply...dry the blood that's shooting from my eyes in anger (kidding)

Meanwhile, if you like, type Dixie6 into "search" on forum...It should list my posts since I joined last summer.  Try typing "Scarlet Letter E" for a detailed explanation of my experience with stage 4 endometriosis.  YOU ARE NOT CRAZY...This is not in your head.  It's in your gut, possibly your vagina, rectum, bladder, ureter...on and on.  I don't want to scare you, BUT...IMO, you don't need Elavil, but you need a doctor who knows this disease, PERIOD.

I'll check back later tonight.  If you like, my email address is available if you click on icon beneath username.  I would prefer you read (at the very least) the post I suggested.  Then we can talk.

Let me say, though...I'm sorry you are in pain.  I know how it affects EVERY FIBER of your being.  I can't fix it, but I will try to help you in any way I can.

BTL....Please listen to me.  THIS IS NOT PSYCHOLOGICAL.  I don't want to see you "buying into" that bull crap.  Your true physical suffering has frayed your psychological health, understandably.  I've gotta chill for a bit=)

HUGS~~Dixie 

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JamesBW
Regular Member
Joined : Oct 2014
Posts : 137
Posted 11/7/2014 5:33 PM (GMT -7)

Bear Town Girl said...

My pelvic pain appointment was yesterday, and I got my third and hopefully last diagnosis there. I am still trying to understand all of this, but I was told I have Pelvic Muscle Spasms & Chronic Nerve Pain. I have done some research and I guess the nerve pain means Neuropathic Pain; i.e. my nerves are telling my brain that I have pain, when there really isn't anything physically wrong. She is prescribing me a

Also, I am very nervous about starting the Elavil medicine- I've never been on any sort of antidepressant like that, and my doctor told me the first few weeks can be rough while my body adjusts. I've also read a lot about having suicidal thoughts & mood swings while on it, and frankly that scares me!


Welcome, though I'm new here too and just a patient like you, so the most I can do is share my experience, but maybe it might be of some help.

Neuropathic Pain is what I've been diagnosed with, and it's NOT in your head (except in the sense that all nerves wind up sending signals to your head where your brain feels the pain). But it means your nerves are sending pain signals and they need to be told to stop that. If there's an underlying cause that can be fixed, that's great. If the only choice is to calm down the nerves themselves with medicine, well, that's difficult but maybe possible. But the pain is not imaginary or "in your head."

My PM specialist said there are several drugs like Elavil, in different related classes, that work to calm down nerve signals. In this case, they're not being taken as antidepressants, they're being taken for nerve pain specifically. People suffering from depression obviously can't just decide to "be happy," but even if that were possible, it's not like you could just "be happy" and the pain would go away, because the medicine isnt being used for depression.

Like you, I avoided such medicines for a long time, because I didn't want the side effects of weird thoughts, mood swings, etc. In my case, at least, other side effects were far more noticeable than mood swings, and when I didn't have other side effects, I didn't have mood swings either.

I tried Elavil, and immediately, just hours after taking the first dose, I knew it wasn't for me. I felt zonked out, unable to focus, doped up, just miserable. No subtle mood swings--I was non-functional! I had my wife stay by my side till it wore off, and in a few hours I was back to myself again.

I tried Neurontin at a small dose, gradually increased it, and it worked for me. Minimal side effects that I could live with for a day or two, and then they started fading--stuff like barely noticeable hand tremors, dizziness. I gradually increased up to 900 mg a day, and it worked, so I stopped increasing. If I take less than that, the pain starts to come back. I've been on Neorontin for maybe a month now and I don't feel like it's affected my mood or "me" at all, unlike Elavil which hit fast and hard.

The doctor said that's what one needs to do--maybe a third of the people respond to one medicine, maybe a third to another, and the goal is to find what works for you.

The main encouraging thing I can say is that for me the bad side effects showed up very quickly--or almost none showed up. So I could decide immediately if I wanted to go ahead or quit. What I did though was insist that no other medication could be changed while I was trying to nerve medication, so I'd be immediately able to recognize any changes and know they were coming from the nerve medication and nothing else.

But if there's an underlying cause that can be treated, I'd say go for that if at all possible. Getting those nerves settled down for real is better than just masking the pain. In my case, they're being pressed on due to swelling from cancer, and anything strong enough to reduce the swelling is so strong it would have worse side effects long term, like high doses of steroids for months. So it's Neurontin for me, but they might be able to find a better pain treatment for you.
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18246
Posted 11/7/2014 9:07 PM (GMT -7)
Hi Bear Town & welcome to the chronic pain forum. So sorry that you have to be here but very glad that you found us. I do want to point out that no one in these forums are drs & they only speak from their own personal experience.

Elavil/Amitriptiline is like many medications, they are often used off label to treat many different conditions. It is often prescribed for neuropathic pain. Back when they first started actively treating neuropathic pain Elavil/Amitriptiline was one of the main medications patients was started on. Since then others meds became available. A lot of people can take it & have no side effects at all. My son was on it for migraines & it didn't bother him at all. Some folks have said when they first took it they felt somewhat sedated but it passed in time. A lot depends on the dosage. Medication is something that is an individual type of thing, we each metabolize medicines differently. Because there are potential side affects with medications they do have to be listed but that does not mean it will happen to you. If it is a problem for you there are other nerve medications out there that can be tried. If you read the potential side effects of Tylenol you would not want to ever take it again, lol.

Neuropathic pain can be debilitating and it is very much a real condition. So, please do not feel like its something being made up or that you are imagining it.

If you like & trust your dr then work with him. If you are not happy with him, then get another opinion.

Anyway, I wanted to pop on & welcome you aboard.
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Backtolife
Veteran Member
Joined : Aug 2014
Posts : 819
Posted 11/8/2014 8:53 AM (GMT -7)

Dixie6 said...


BTL....Please listen to me. THIS IS NOT PSYCHOLOGICAL. I don't want to see you "buying into" that bull crap. Your true physical suffering has frayed your psychological health, understandably. I've gotta chill for a bit=)

HUGS~~Dixie

Dixie - please don't misunderstand. When I say it's in your head, I mean it is NEUROLOGICAL not PSYCHOLOGICAL. Definitely I do not think it is somehow made up or psychosomatic.
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Admin
Forum Administrator
Joined : Jan 2003
Posts : 10196
Posted 11/25/2014 2:01 PM (GMT -7)
Dixie6,
Please refrain from giving medical advice. Patients should seek advice only from a qualified professional.

Peter
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Dixie6
Veteran Member
Joined : Aug 2014
Posts : 1022
Posted 11/25/2014 2:13 PM (GMT -7)
Oh, my, Mr. Waite...I didn't realize I had given advice that was any different from other members.  I'm shocked.  I would be happy to apologize to fellow member(s).

I certainly apologize, as I meant no harm to anyone.  Please feel free to email me to discuss this, if necessary.  I don't want to jeopardize my ability to post.

I'm sorry~~Dixie

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jauxhoun
New Member
Joined : Oct 2014
Posts : 16
Posted 11/25/2014 3:12 PM (GMT -7)
Hello BT!

I actually teared up at your post a little bit. That is EXACTLY how it happened to me - I'd had sex with my partner and a little bit later, I started having extreme cramping pain. I too had massive cysts, and the ultimate diagnosis for me has been grade IV endometriosis. I have significant problems with developing large ovarian cysts, but because my labs come back normal, I've not been diagnosed with PCOS. I'm waiting back on the biopsy results from my laparoscopy on the 21st, but my specialist/surgeon believes that the cysts are caused by endometrial tissue.

As far as sex and intimacy go, I absolutely feel you there. I have an incredibly loving boyfriend who is the most patient, gentle man I've ever met, but he's also very, ahem, *gifted* by nature, and is of course, a young man with a very healthy libido. Sex causes me severe pain, especially with a gentleman of his proportion, and even orgasm can cause me pain. And just the 24/7 pain of life makes my libido very low. I wish I could offer you some kind of advice here, but 2 years later I'm still working through how to manage my condition and my ability to be intimate with my partner. I've actually told him that if he wanted to be intimate with someone else, strictly for the sex, I would be okay with it just because I want him to be happy, but he's never taken me up on the offer. We have lots of adjustments and little techniques we can use to help reduce my pain, and if you wanted any more specific advice, I'd be happy to share - just send me a private message so we don't turn this thread into something different! LOL.

For managing my pain, I've taken a variety of medicines, including muscle relaxants, atypical muscle relaxants, NSAIDs of all categories (IV/IM/BID), various opiates (IV/BID), gabapentin, antidepressants, carbamazepine and pretty much every form of hormonal birth control available. To be perfectly honest, the antidepressants, gabapentin and carbamazepine did nothing for my pain. The gabapentin caused me huge side effects, and while I take antidepressants for actual antidepressant effect and I love how it works, it has also caused me to develop what I believe is PGAD, persistent genital arousal disorder. I have not pursued a diagnosis of this and I don't believe mine is very severe, but I am happy to discuss that further in a PM if you want.

As far as natural therapies go, I loooove going to pelvic floor physical therapy. I didn't even know it existed until my doctor mentioned it. It's a combination of stretches, strength training, massage, internal massage/techniques, electrostim and other therapies to help heal chronic pelvic pain and dysfunction. It has truly helped me deal with the severe urinary retention & bowel dysfunction the endo caused me, along with reducing my pain. I usually go twice a week and I got my insurance to cover it. I highly recommend it.

I love acupuncture - it works fantastically. No idea how or why, but man am I a believer. It's expensive though and not covered by my insurance, so I don't do it often. :(

One of the biggest helps I've used is my TENS unit. Mine is a really lovely unit that is $600ish alone but was covered 100% by my insurance, but you can pick up cheaper models online in various places, even on Amazon, and I've seen some less powerful units in drug stores in America (didn't see any when I was living in Europe, sorry). I was taught some prime locations for the electrodes by my PT, and those have been extraordinarily helpful. It's odd thinking about it, but when I want to be intimate with my partner, sometimes I'll do so with the TENS unit on (crossed over my pelvic floor muscles) to help block the pain. It works, though not completely, and not all the time, but anything is a help, y'know?

Though I am training to be a yoga instructor and I am a serious yoga fanatic, it makes my pain a thousand times worse. Yoga has been responsible for bursting a bunch of cysts. Ick. The long-term effects of yoga are great, but it absolutely, 100% does not help in the short term. Sorry.

I've heard that the essential oil clary sage, applied over the ovaries (external use only), works wonderfully, though I have yet to try it.

Best of luck! Prayers and warm wishes to you as you start a new medicine. That is always scary, but you'll find lots of support here. I'm new too but the support and warmth of the community has been amazing.

Good health to you,
Remy
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Linds_
Veteran Member
Joined : May 2013
Posts : 853
Posted 11/26/2014 4:54 PM (GMT -7)
Hello... I also have chronic pelvic pain and stage III endometriosis and I am on 50 mg of Elavil at night. I'm also on 25 mcg fentanyl patch (changed every 48 hours) and 15th Oxycodone for BT pain. When I first started receiving treatment I was only giving short acting pain medication and an NSAID. When my doctor suggested Elavil I was very leary but she said it is used off label to treat chronic pain and and the dose I'm on is not therapeutic for depression. I had trouble sleeping because of the pain and she said at the very least I would be able to get a good night's sleep. Well, It literally changed my life. It made my pain much more manageable although it is still constant. When I first started using it I found that shortly after taking it I would be very tired and if I didn't go to sleep right away I could have conversations and not remember them the next day. My sneaky 12 year old son realized it too and started asking me about field trips, watching movies I'd never let him watch under normal circumstances and for money in the morning. LOL. I had to start announcing that I was taking my nighttime med and no more questions for the night. I also felt a little foggy in the morning and I set two alarms to wake up. By the third week my body adjusted to it and now I feel normal in the mornings. I hope it works well for you too! It definitely sounds like endo symptoms to me too. Endometriosis can only be diagnosed by a laprascopic surgery where where a biopsy of your uterus is taken because endo is microscopic so I'm not sure how they can rule it out without a diagnostic lap. I hope you get some answers soon and he medications work well! :-) Let me know if you have any questions about my experiences on Elavil. I'm glad to help.
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Lovespeas
New Member
Joined : Nov 2014
Posts : 1
Posted 11/30/2014 7:11 PM (GMT -7)
Hi
Been dealing with chronic pelvic pain for eight years.
Not fun.
And right now dr will not increase my meds even though I myself asked for it to be lowered when I felt better. I guess I can go down and not up?
I have had surgeries, biopsies, pelvic floor PT, chiro, herbs, all kinda of pills incl anti-depressant types and more, shots, morphine, etc.
But the biggest deal right now is not being treated adequately for my pain and get this... I am only on Hydrocodone now. The lowest dose and the least amount, one every six hours.
Its not enough, I cannot sleep, Dr will not work with me on it.
Unbelievable.
I have never been red flagged or whatever. Just an arrogant doctor who feels enough is enough I guess.
Sorry you are in this chronic pain boat.
I will tell you this- be careful. The constant spasm made my posture off and I ended up with disc surgery.
Anyone know a good doc in Las Vegas?
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Backtolife
Veteran Member
Joined : Aug 2014
Posts : 819
Posted 12/1/2014 5:03 AM (GMT -7)
Those of us who are talking about chronic pelvic pain, I think you should ask your doctor about pudendal neuralgia or pudendal nerve entrapment. It is rare but the pain it causes is SO severe, and it doesn't show up on MRIs usually because it's so low down your spine.

Just a thought, it's probably not the cause of your pain, but if you don't know what is, ask your doctor maybe about PNE.
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