Nobody seems to care about treating the pain.

Remy,

First of all, welcome to HW - you will find a lot of support here.

I'm also "too young" (at 38!) to have chronic pain. Doctors ignore me. I get brushed off by them even when I clearly tell them I am NOT looking for a script.

Have you told your GP all that is going on?

Another thing. Relief doesn't come in a bottle. In addition to your pain meds, you need to develop some other coping mechanisms for your pain. Relaxation, deep breathing, a TENS unit, etc.

Be careful going down the road of opiates. Try other things - neurontin, lyrica, other nerve meds, physical therapy.

I recommend 1) seeing a female doctor (which I think you are, but try to get your specialists to be female, as well) and 2) going to a women's health center that specializes in whole-body treatment.

If you have any major hospitals near you they probably have a women's health unit. Please contact them, they may be your best chance! Good luck ...

Hello Remy and welcome to the CP forum at HW...

First let me say how sorry I am about your pain and second these ladies have given you some great advice based unfortunately o on experience. If you live close to a University hospital most all of them have a Women's center or fertility specialist who are going to be well versed in womens issues.

Please start now trying to find some help because your primary Dr is bound by
so much red tape and regulations they cannot treat you and pain very long.

I also recommend seeking a therapist that is experienced in chronic pain and they really can be a lot of help.

Good luck to you and welcome aboard.

Hi Remy. Welcome to Healingwell. I just joined recently for chronic and very severe pain, & the supportive people of this site have helped me to get through a really bad bout of pain this month.

Your story sounds just like my story in many ways. I started having bad & crippling pain when I was 12. My menstrual cycles were - & still are - torture. When I began college, the pain had become SO horrible that I often missed classes & labs. Finally, when I was your age (19), I went to an internal medicine doctor, & he totally brushed me off. He told me, "Pain during periods is normal." He gave me a script for Anaprox DS, & when I asked for a referral to a GYN, he said it wasn't necessary. So, for the next 7 years, I suffered with increasing pain, & in order to make it to class, I had to take massive doses of
Anaprox. This is very dangerous, but the pain was so horrendous that I had to do what I had to do.

When you listed your symptoms, those were the SAME exact symptoms I had at your age, & still have today. So I totally understand.

When I moved to attend a very demanding graduate school, I asked my new doctor for a GYN referral, which he made. During my first visit with the GYN, he immediately wanted to do a laparoscopy. At 26 years old,I had the surgery, & when I woke up, I remember the recovery room nurse telling me, "Your surgeon found a ton of endometriosis in you." At that point in time, they just burned the lesions with a laser. (In fact, even today, the GYNs not trained to operate on endometriosis still burn lesions instead of excising or cutting then out.)

I was extremely relieved to finally know what was causing my pain. Unlike what the previous doctors said, my pain was NOT normal. The GYN first tried birth control pills on me, but I couldn't tolerate them. Then he moved onto Lupron, which was a disaster because of the wicked side effects. Despite the fact I complained of pain, he wouldn't give me pain meds. The surgery actually reduced my pain for 2 months, but it then came back as bad as before.

I also suffered from severe asthma, which has been linked to endometriosis. My asthma doctor was at a university teaching hospital, & he referred me to a reproductive endocrinologist. This doctor was really the first one that understood my pain & treated it. She gave me Lortab each month, which made a huge difference.

I completely agree with Dixie that you need to find a doctor with more training & knowledge about pelvic pain. I highly suspect you have endometriosis, & you will get a completely different response from trained doctors. There are great endo & pelvic pain surgeons in Atlanta, Oregon, New York, & California. If at all possible, I would look into contacting one of them. 6 years ago, I had surgery with Dr. Sinervo in Atlanta. Google 'Center for Endometriosis Care" or Dr Sinervo. All you have to do is send them a list of your symptoms, & the doctor will contact you. Also Dr Sinervo has written several great articles about endometriosis & its symptoms. You indicated you have diarrhea, which is also one of my demons. Dr Sinervo has an article on his site about the relationship between diarrhea & endometriosis.

Of course, all the specialized doctors are good. So if you are closer to one of the other docs, it will be worth teaching out to them. If it is not possible to go to one of these specialists now, see if there are any reproductive endocrinologists in your area. Or are there any doctors that just practice gynecology & not obstetrics? Unfortunately the reality is that many OB/GYNs are only interested in taking care of pregnant women.

I am now in my late 30s & have been battling my endometriosis non-stop. I was fortunate to have 3 surgeries done by endo specialists - two by an excellent surgeon at the National Institutes of Health & one in Atlanta. Like Dixie, I also have stage 4 endometriosis. The surgeries by the specialists helped in that I no longer suffered from severe pain every day of the month. (Before they operated on me , I had massive pain all of the time.). But I still have astronomical pain for about 12 days a month.

I live in a city where the doctors - including the GYNs - totally ignore my complaints of severe pain. Despite the fact the NIH doctor wrote me a couple letters to give to the doctors, explaining why my pain is severe, they still ignore me. Thus I really get what you are up against now. I am at least so glad your regular doc is helping you with pain control. Still though, you really need a lap. A MRI is unlikely to show many endo lesions, but it will pick up on cysts. A common cyst related to endometriosis is called an endometrioma.

I now cannot find a doctor to help me with pain control, & I am so miserable on many days that I end up curled up in bed crying. Last week my doctor refused to give me any Lortab & treated me like a drug addict. So she gave me Voltaren, a powerful NSAID, & said it would be fine to take it with the Anaprox. I now have a horrible ulcer that has formed as a result. Also I had an anaphylactic reaction to the Voltaren. Despite this, they still wouldn't give me any Lortab.

I have decided to get a hysterectomy, & it will be done by a GYN oncology surgeon. I dread the surgery but look forward to having less pain.

Continue to advocate for yourself. And remember you are not alone. Reach out to an endo specialist or at least a reproductive endocrinologist. Take care of yourself & I wish you the best of luck in finding a knowledgeable doctor
Jody

Post Edited (SoTiredofPain) : 10/21/2014 3:56:56 AM (GMT-6)

Remy - sounds like you're a lot more proactive about your health than I was at 19! I had a hysterectomy (I have three kids, we were all done) in July and it did not help my pain one bit. Actually I'm beginning to think they messed it up and that I have nerve damage now, but that's another saga.

Supposedly I had adenomyosis, which is endometriosis but inside the uterine wall. It's treated much the same as endo - lupron, hormonal b/c, etc. Though there was no evidence of it in my uterine biopsy, CT, ultrasound, or MRI, I was dumb enough to let my gyn "sell" me the hysterectomy. Learned a lot from that one.

No doctor will probably perform a hysto on you, even if you beg. Again, you're "too young." Not that you want to or should go that route, it's just something that really bothers me, when doctors won't do it for that reason.

I completely feel your pain. Before I started pain management, I literally wanted to crawl into a fetal position and just cry all day, my pelvic pain was so bad. And every doctor gave me the same thing - it's all in my head and I "shouldn't" have so much pain. When doctors use the word "shouldn't" it's my least favorite word in the world.

I'm glad you found this forum. A note about it - many of our members have trouble tracking text b/c of vision problems, so it's best to put a lot of line breaks in your posts. :)

Two more things - 1) find a pain management clinic before your meds run out and 2) if you have or can gain access to medical marijuana it works very well, and you can obtain it in forms you do not have to smoke; there's topicals, edibles, all that kind of stuff for people who care about their lungs.

Hi, Mine began at age 17. I was walking across the street to a college class and dropped to the ground. I was rushed to the hospital, given a pelvic exam and all they found was anemia. I knew I had severe pain from cramps but thought at the time everyone did! It all started there... After years of doctors, specialist and Voodoo Priestesses (joke), I found a OBGYN surgeon in Pgh, PA who did one exam and said, we need to do a laparoscopy as I believe 99% you have severe 'Endometriosis'. After 7 hour surgery (1990) I had many large cysts taken out and TONS of Endo... Now, to make a very long and painful story short, I have since had 7 more surgeries including 2 bowel resections and many organs removed as they were completely destroyed by the disease. In 2005 or so, my doctor quit his practice and joined the military to serve as a military surgeon in France. I then found another surgeon who opened me up and immediately closed me as he found my case was out of his area of comfort. I then moved to Cleveland, OH for my husbands job and started treatment at the Cleveland Clinic. The 'section head' or 'Dept chair' was my surgeon. I though that I was in capable hands as this guy, (name left out) is suppose to be a world authority on this debilitating, life stealing, evil disease. All I can say is I almost died during my last surgery in July. I bled internally, required transfusions, could not bring my BP up, and eventually ended up in critical condition. All the while, my surgeon was in a third world country on a speaking excursion. He was so 'kind' to leave his physician assistant in charge and a fellow as needed. I will stop there as I am too angry to talk about it further...

Point is, I had every single symptom you write about when I was just 17. If you do not get treatment now, by a VERY competent specialist, you may never have a child naturally, end up with a hysterectomy, continued depression and pain you cant even imagine. However, there IS hope...

You must find a laparoscopy Gynecologic surgeon ASAP.
You must also have a great Primary Care doc to help over see the treatment.
Then you must find a regular Ob-Gyn who is not just into IVF or delivering babies.
You have to establish a team.

Start with your PCP. If they don't help, go to another and then another.
Then, find a great Ob-gyn and finally a surgeon. If you skip the first two, I can tell you the surgeons will only want to cut and NOT manage if you do indeed have Endo.

I wish you luck and strength. If you have this disease, you are in for a fight but I pray it is not as bad as what I have dealt with. I hope I am wrong and your issue is more simple but I can say that everything you said is exactly what I went though.

DO NOT GIVE UP! EVER! Trust me, I understand but also know your hormones are probably out of whack and changing daily. This could explain your depression. You are not crazy! Remember that and know that although you are in pain and feel alone, there is always hope and you will have good days. This too shall pass. Best wishes!
PS. Endometriosis is VERY common. However, only a small percent of the cases actually progress to stage IV. The ONLY way to 100% diagnose it is through laparoscopic or 'open' surgery. There is NO other way whatsoever! I really suggest you look at reputable websites to see if you fit the symptoms (Endo...research center.org, endo-resolved.com, endometriosis.org, are a few. Do not exclude this obvious possibility. First rule it out and then you can encourage your doctors to look at more 'rare' conditions. Remember, if it looks like a duck, acts like a duck and quacks like a duck, its probably a duck! lol

Post Edited (instant karma) : 10/25/2014 7:26:24 AM (GMT-6)

Instant karma welcome to the forum and we all would love to meet you and say hi. Your experience is valuable to others so I hope you start a intro thread so everyone can say Hi.

To the OP should she return the advice IK gave you is spot on!!