Need help from those with history of ovarian cysts and endometriosis

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Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 10/4/2011 3:49 PM (GMT -6)   
For the past year, my periods have been getting worse and worse. At first I had tolerable cramps that subsided within a few days of my period. Gradually it got to me being in bed the first couple days, then having to take pain meds for the cramps the rest of the time I had my period. I also have been having horrible hormonal headaches, which at first would only last a day or two, but now last the entire period as well.

I recently went to my PCP because I was out of meds and needed something to get me through the headache phase. I mentioned that I've had multiple ovarian cysts rupture and have had precancerous cervical cells removed. He suggested that I might be developing endometriosis. Because the crohns and all it brings is overwhelming at times, it scares me to think I might have another disease to deal with.

I have both GI and GYN appointments on Thursday and Friday and I'm wondering if there are any questions I need to make sure to ask. I'm guessing the GI will blame it all on GYN issues, and the GYN will blame it on me having Crohn's.

Keep in mind also, that I am unable to take anything with hormones because I have had blood clots go to my lungs. Does this mean, should it actually be endo, that the only treatment would be surgery or a hysterectomy, or do they just help you manage the pain?

I would appreciate any and all suggestions and advice you may have. Thank you for listening and helping!
Becky

Crohn's since 1997
Surgeries: 2 Bowel resections, appendix & gallbladder removed
Pulmonary Emboli & Pneumonia 2009
Currently on Humira, Omeprazole, Prozac, Calcium, Vit D, Aspirin, B12 shots

Boxerlover
Regular Member


Date Joined Dec 2006
Total Posts : 275
   Posted 10/4/2011 5:25 PM (GMT -6)   
Hi Becky, I had a terrible time with cysts and endo. Mine started when I was very young. Like you the first few days of my period where horrible. Then I started running a fever and took to my bed as well. I was always nauseous and just very sick. Now unbeknownst to me at this time, I also had sarcoidosis which is an auto-immune disease similiar to Lupus, RA and Chrohns.
 
The first two cysts that I had ruptured and both times I was bleeding internally so I had to have surgery. Once I was diagnosed with Endo, they tried me on Lupron which was not fun, I did not tolerate it well. When they did the lap they said I had more Endo then before I started the Lupron so they discontinued it. I was 19 at this point and they asked if I was dating anyone seriosuly and could have a baby. I wasn't and that was not an option. I kind of just dealt with it for awhile then I had another cyst rupture. This time I was rushed into emergency surgery and they had to do a radical hysterectomy.
 
To be honest, it was the best thing I ever did. I woke up and wasn't in pain. For years I walked sort of bent over because of the pain and it was gone.
 
Now that I have been diagnosed with Sarc, and I sent back for my old records and a biopsy taken back then clearly shows I had Sarc at the time. They are doing studies to see the relation between Sarc and female problems. I am not a Doc or a medical professional so this is just my gut feeling but I think there is. I have dealt with this disease for 10 years now(well officially 20) and I kind of know its nuances and I believe it played a part in my female problems.
 
But depending on where you are and how you feel on the children issue, a hysterectomy can be the right choice. I didn't have a choice, but I am so glad that is what happened. For me that was the best solution. Like you said, you are alread dealing with Crohn's, now having Endo to deal with too can be hard and there isn't a lot of options. I don't know how old you are but hormone replacement is something you need to think about. I wasn't allowed to go on HRT right away because it could cause the Endo to grow in the abdomen. I chose to start it about 7 years ago for personal reasons but my doc would prefer me off of them.
 
As far as questions go, if you do have it, I would just make sure to go over all your options. That way you can go home and think about it before you would have to decide anything concete.
 
Good Luck!

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 10/4/2011 8:25 PM (GMT -6)   
The unfortunate thing is that I can not take any type of hormone. Once you have clots go to your lungs, doctors will not allow you to take any medicine that has hormones. I felt so much better when I was on the pill, but I can never go back on it :(
Becky

Crohn's since 1997
Surgeries: 2 Bowel resections, appendix & gallbladder removed
Pulmonary Emboli & Pneumonia 2009
Currently on Humira, Omeprazole, Prozac, Calcium, Vit D, Aspirin, B12 shots

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 10/4/2011 11:28 PM (GMT -6)   
Monk,
I was the exact same way, first few days fine then theyngot worse and worse and on top of it my crohns would flare..I finally had a hysterectomy, best thing I ever did..no more pain, no more flares..it was a god sent!
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,dx,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 10/4/2011 11:41 PM (GMT -6)   
Surgical removal of the endometriosis by an endometriosis expert is the best option. A hysterectomy does not cure endo. Some women do benefit from a hyst but for others, the endo flares up again and they continue to suffer.

If you have adenomyosis (basically uterine endo), removal of the uterus will stop the cramping & pain from the uterus. In this case, a hysterectomy will help, especially with cramping. Any other endo left behind might cause problems in the future but if most of the pain was from the uterus, it will be easier to deal with whatever endo is left.

Your signature shows that you've already had 2 surgeries. It is possible that you have adhesions too. Adhesions can be quite painful and are difficult to deal with. Adhesions can be surgically removed but surgery causes adhesions so multiple surgeries can be risky.

Endometriosis is diagnosed surgically so if you choose to do this, make sure your surgeon is prepared to remove the endo at this time. You want a surgeon that can recognize endo in all of its forms and is not afraid of difficult cases. Do some research on endo so you can quiz surgeons to help you find a good on that actually know about endo. Some claim to be experts but they aren't familiar with the latest information.

Do a lot of research before choosing a hysterectomy. Since you can't take hormones, you may end up just changing one problem for another. If you continue to have problems with endo after a hysterectomy, many docs will tell you it can't be endo because you've had a hyst. This is not true, endo does not always "dry up" after the ovaries are removed.

My former GI said my pain is Gyn and my former Gyn blamed it on my intestines. My current GI believes my pain is from multiple causes. Now if I can find a decent gyn that accepts my insurance, I'll be happy.

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 10/5/2011 5:30 AM (GMT -6)   
Dagger, Lasardo, and Boxerlover have given the same advice I would have given. Sometimes hysterectomy works and takes care of the pain and issues, for me it created more complications that made life worse than the adenomyosis was, and it was pretty bad. My symptoms were the same as yours during my teen years, and for years in my 20s Chron's was blamed for my issues also. I agree wholeheartedly that if you do decide to have surgery, do it with an endometriosis specialist who can identify every type and has experience removing it.

I also wanted to offer my support. What you are dealing with isn't always easy to talk about or widely understood. When I worked outside the home, most of my coworkers were either resentful of time I needed off, or irritated by repeated tests and surgeries. Some of the men and not as compassionate women even said I was faking it to my face and behind my back. Right now I am fighting for the long-term disability benefits I paid for while employed, trying to prove that simply because my diagnoses are not all classified as disabling by the government, two of the five are, and all together create for a low-quality of life. It creates more work and can lead to other issues.

As for treatments, Lupron is an injection that stops all hormone production in the body. I am currently on it, and like Boxerlover, have a lot of side effects and can't tolerate it. It was worth a shot. It also is not stopping my endo production. Some forms of endo produce their own hormones, and even ovaries that have been surgically removed can reform if there is ovarian tissue left. Its called ovarian remnant syndrome, and I am on my 3rd ovary on the right side, which is creating its own hormones and eggs, and ovarian cysts as well. It will be removed soon in the future, after my wedding in 2 days, which begins the cycle of new adhesions for me all over again.

I find heat helps the endo pain, and ironically, gentle walks keep the bowel issues under better control and that can have an effect on the endo pain.

Good luck to you. Please come back and let us know how you are doing!
Mindy

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/5/2011 9:03 AM (GMT -6)   
Becky, the women here have all given very good advice and info. I just wanted to add that pain management definitely has a place in endo treatment, especially if you can't take hormones. I was unable to take hormones for a few years (as my body decided to have constant bleeding and cramping while I was on the pill), and during that time I managed my pain with opiate painkillers. I was able to get to the point where I could function on day 1 of my period about half the time, rather than always being in bed.

I am very lucky in that right now, I am successfully managed on the continuous birth control pill. I have also had success with taking anti-inflammatories (800 mg of ibuprofen) starting two days before my period begins. This stops prostaglandin production before your period starts, reducing the cramping and pain. I'm not sure if NSAIDs are an option with your Crohns, but I would talk to your doctor.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 10/5/2011 11:03 AM (GMT -6)   
Thank you all SO much for taking the time to educate me. I appreciate it more than you'll ever know.

Dagger-Yes, I do have lots of scar tissue and adhesions. I am actually a "scar tissue factory" My most recent surgery in July was to remove adhesions because they were causing small intestine obstructions. It could be possible that this is the problem, and that all the scar tissue is pushing down and the inflammation that naturally occurs when you have your period is pushing back.

At this point I would not be willing to have a hysterectomy. I still do want to have kids, and want to leave that option open. Should I not be able to get pregnant in the future, or I get to an age where it's too much of a risk, it would be something I'd consider.

Heather Lynn-Unfortunately I can not take NSAID's. They can cause a crohn's flare, and right now my crohn's is under control and I wouldn't chance disturbing it while it's currently "asleep"

Right now I'm just scared that they'll find nothing and make me feel like it's all in my head. I get tired of having to ask for pain medicine. I don't want my doctors to think I'm there just for drugs, and sometimes I feel like that's what they think. At the same time, I'm afraid that they will find it's endo, which just gives me one more disease to deal with.

After Friday I hope to have more answers. By then I'll see both my GI and GYN.

Again, thanks for your time and support ladies!
Becky

Crohn's since 1997
Surgeries: 2 Bowel resections, appendix & gallbladder removed
Pulmonary Emboli & Pneumonia 2009
Currently on Humira, Omeprazole, Prozac, Calcium, Vit D, Aspirin, B12 shots

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/5/2011 9:47 PM (GMT -6)   
Becky,

I completely understand the fear of having yet another condition to cope with. I felt the same way with my fibromyalgia diagnosis. But it was also encouraging to realize that while all my chronic conditions were difficult to deal with at first, over time I have learned to manage them all. If you have endo, you will learn to cope with it. The beginning is always the hardest part.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 10/6/2011 1:11 AM (GMT -6)   
Monkray
I so understand your pain, My crohns was under control and I was suffering from crohns flares during periods and chronic pelvic pain..so I had a hysterectomy even though I wanted more children..the pain did not go away bUT my ceohns doesn't flare every month, that pain was unbearable, pushing down on everything. They found when they went in there I had alot of adhesions and scar tissue of course (have a colostomy) but feel the same way..one more diagnosis, just went to a spinal specialist..degenerative disc dx, and my scolioisis is at a 42 degree angle..42 degrees! And progressively getting worse. I also having a severely tilted pelvis and wonder if that is the chronic pelvic pain that I am on so many meds for..or it may be the 13 surgeries I have had to reconstruct my rectum/vagina..who knows, just another diagnosis..
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries,dx,fibromyalgia.42 degree scoliosis,pelvic tilt and neurological impingement, complete loss of neck curve and degenerative disc dx

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 10/6/2011 6:45 AM (GMT -6)   
I too understand the feeling of one more diagnosis. As things keep popping up like kidney stones, ovarian remnant syndrome, RA, it got to me in many ways as well. Eventually it just becomes another thing to manage, as Heather Lynn said. You can get used to it.

I do have days that I allow myself to feel sad or depressed, but I don't let it last the whole day if I can or let those feelings take over. Endo is manageable, and with good doctors and pain management if you need it, you can continue life. Some never have it return!

Take care,
Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw
Pelvic adhesive disease, IBS, SI pain, arthritis, kidney stones, depression, 10 pelvic surgeries for pain, ovarian cysts, adhesions, endometriosis, adenomyosis, and possible ovarian remnant syndrome. Unexpectedly growing ovary #3 on right side.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 10/6/2011 8:33 AM (GMT -6)   
Thank you all so much for your support and advice. I see the GI later today, and GYN tomorrow, so I'll check back in with you after the appts and let you know what they had to say.
Becky

Crohn's since 1997
Surgeries: 2 Bowel resections, appendix & gallbladder removed
Pulmonary Emboli & Pneumonia 2009
Currently on Humira, Omeprazole, Prozac, Calcium, Vit D, Aspirin, B12 shots

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 10/6/2011 9:16 AM (GMT -6)   
If endo is suspected, you might want to contact The Center for Endometriosis Care in Atlanta. They are among the best in the country at treating endo and pelvic pain. The docs there handle the cases that other docs can't. I have wonderful things from friends that have had surgery there.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 10/7/2011 5:55 PM (GMT -6)   
Ok, so my GI ordered an MRE to investigate and see how the crohn's is doing, as well as an MRI of my liver (had an abnormality on a CT). He thinks my crohn's might be active, if only mildly, and contributing to the period pain. He really wants to get a good look at what's going on to make sure we don't need to change my meds. My last colonoscopy was a year and a half ago but he doesn't think another scope will show the whole picture, so MRI it is. We also discussed what we'll do should the tests show active crohn's.

Today I saw the GYN, and she was so very nice and understanding. She didn't really like that another doctor suggested what it might be when they don't know much about endo and had done no test or exam. But...she does think that's a possibility. She told me that most treatments for endo and/or menstrual pain revolve around hormone therapy, which severely restricts what she can do. She said also she'd be hesitant to do a laparoscopy since I had surgery in July and have so much scar tissue. That could be far more dangerous than helpful. So she ordered an ultrasound to start with, and did a pap smear as well. I will make an appointment with her after the ultrasound to discuss what to do next.

I did talk to her about pain medicine, and was pleasantly surprised that she was not hesitant to write a script. I told her I had lortab 5's but since I have to take 3 for them to help, I was worried about all the tylenol in my system, knowing that I have an abnormality in my liver already. She discussed with the pharmacist and prescribed lortab 15's without the tylenol added in. I asked if I should give them the lower dose lortabs to dispose of, but she said to keep them to use on days as the pain is lower but I need something.

Right now I just need to wait and see how all the tests come out. She mentioned Lupron as a possibility, but said that's something we'll discuss further after tests. (I have heard a lot of negative things about Lupron so I'll research that in the meantime)

Also, I have to talk to the pulmonologist that treated me when I had the pulmonary emboli to see if it's ALL hormones or just estrogen that I have to avoid. She said there are possible progesterone treatments that could help.

Dagger, did you look at my profile, or post that just because they're known to be good? I live in GA about 30 minutes from Atlanta...didn't know if you knew that or it was a coincidence.

I cannot thank you all enough for your support. It's so overwhelming to have multiple things going on, and having to wait for tests and everything to figure out what to do next, but you all have helped me realize that no matter what, I'll be able to deal with it.

Hugs to each of you, and I wish you low pain days!
Becky

Crohn's since 1997
Surgeries: 2 Bowel resections, appendix & gallbladder removed
Pulmonary Emboli & Pneumonia 2009
Currently on Humira, Omeprazole, Prozac, Calcium, Vit D, Aspirin, B12 shots

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 10/7/2011 6:51 PM (GMT -6)   
I had planned to recommend the CEC because they have the best reputation and I recommend them to everyone. I was especially pleased to see that they may actually be a possibility for you.

They will do a free records review if you are considering surgery. The docs will actually call you to discuss their recommendations. Check out their website, it is full of great info.
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