I am a 26 year old currently trying to conceive. I have only been off my BC since July, and am not at all concerned about conceiving right away, as I know that is out of my hands :) I was on BC for over 10 years. What I AM concerned about is the pain I have had since ending my BC. The various pains I experience include sharp, stabbing pain in the lower pelvis at various times throughout the month. (I believe this is due to a cyst that was discovered via ultrasound a few weeks ago). In addition to that pain are the period related pains. A few days before, during, and after my period (which has yet to come on a regular schedule), the cramps are intense. They occur in both my back and pelvis. I also have a feeling as if all my pelvic organs have been "glued together." My lower abdomen/pelvis feels "heavy" and just.....awkward. Things like urinating, passing gas, and bowel movements can be extremely painful (gas and BMs are the worst, and bowel movements are loose....no constipation). The best I can describe the pain is that the pelvic organs that are "glued together" are now being torn away from one another. I have been to both my PCP and GYN for these pains and am continually being told this is all normal and that everything is just balancing out, and perhaps I've just forgotten what it feels like to have period pains. NO. I know they are trained physicians, but they do not live in my body, and MY body is telling me something is off. Do I believe everything is still balancing out? Absolutely. But do I think crying due to fear of using the restroom is part of that balancing act? NO.
Prior to going on BC in my teen years, my periods were heavy and long, I would pass clots, and on one occasion ended up in the ER because I was (quite literally) writhing in pain. After that experience, I was placed on BC. It look several different types of BC pills and going to a quarterly cycle before things (for the most part) leveled out for me. I still would have to take ibuprofen consistently during periods, but it was certainly manageable.
Now I am back to pain that makes me not want to leave my home and heating pad, and doctors that have nothing to say except, "That's all normal." My fear is that it is NOT normal. I have suspected I have endo since highschool, but once going onto BC and getting everything under control, there was no need to pursue that suspicion. Now I fear that if it is endo, not only will I be dealing with pain, but my husband and I may have difficulty conceiving.
This post serves as a cry for help, but also as a way for me to vent my current frustration. Any stories, advice, or words of encouragement you ladies can share would be so greatly appreciated.
Thank you for the input everyone. It is worth mentioning that I had a colonoscopy earlier this year and it was unremarkable.
Nervy Girl - that is all excellent information. Thank you! And I know the heat wraps well. My mom would put them on me and send me to school so sitting through classes would be easier :) My current pain management is 800mg of ibuprofen every 4 hours on the dot. If I forget and go over the 4 hours it can be hard to get the pain back under control.
I think most of my frustration is coming from being told the pain is normal. It's upsetting to think this is what I get to "look forward to" each month. However, I'm thankful that this is the biggest stressor in my life, as I know situations can always be worse.
Interesting, Gamma!! For years I thought I was having misdiagnosed GYN issues. Ended up, the pain I had was a result of diverticulitis! A midwife even told me that I might have that. Well, I got pregnant just looking at my husband (haha) and then 8 years later, had part of my large intestine removed!
So yes, there could be other issues going on. But you do indeed need a second opinion.
Good luck!!
T., I'm sorry you are so angry and frustrated. I've also been down a similar road and know that level of pain. It's mindboggling. I get it.
Were I in your shoes, I'd ask to rule out the chronic appendicitis. It does happen (not usually coincident to going off birth control) and they can run a test for it. I had an appendectomy last year and if you are young and healthy, you will bounce back easily. Better to have it checked before it ruptures because there is a wholly different level of danger of going septic. They can run a blood test for high white blood cell count. This is a minimally invasive first step.
That said, if you have endometriosis, they can only diagnose this by going in laproscopically and assessing this visually. I've dealt with this for years. I've had the irregular menses and pain you describe. I had 3 miscarriages, to be honest, over a span of ten years, before I had my son.
You might want to get a blood test to check for a mutation on the MTHFR gene. This causes the body not to metabolize vitamin Bs. There are supplements which can correct this. Endometriosis and other reproductive/PMS issues are common symptoms of this mutation, which is only newly known but very common. It's worth checking out. We have this in our family and are only beginning to address this.
This is also a good idea before TTC.
You can have an unremarkable colonoscopy and still have IBS. That said, some people's IBS does flare up near their period. Others just have horrible periods. I went on BC for this because I was at the point of having everything removed. The pain was so bad. Thermacare makes an adhesive heat pad which adheres to your underpants, and this is very helpful on days when you need to get out of bed and go to work. Use N-SAIDS (naproxen/ibuprofen) to reduce inflammation. I'm so sorry. I hope you can continue to dig in and find a reason for the pain you are suffering. It's so hard because periods really shouldn't be that horrible.
And if it helps, because of the horrible cramps, childbirth was actually easier than a really bad period. There is a bright side to some things, weird as it may be.
I would get a second opinion.
I once was suspected of having endometriosis in my 20s. Turns out I had IBS which is Irritable bowel. I had a slight lactose intolerance that was doing a doozy on me. The reason I mention it is you mention fear of going to the rest room. I had bowel spasms and back spasms that were very painful and would get worse around my cycle. Not saying that's what you have, but it's in the same general area. I remember thinking it was related to menstrual cramps except a million times worse. And I remember describing it as feeling like my abdomen was being torn apart.
I saw a GI specialist. That was after being doubled up in pain and being taken to the ER. For me, I eliminated dairy and that solved the problem. Some of my kids now have lactose intolerance. I only sometimes have issues now - it was worse in my twenties.
They can do ultrasounds (I had one) to check for abnormalities - they actually insert the wand they use vaginally. Not painful - just a tad awkward. I would ask for one of those so you can determine for sure where the pain is coming from.
I too had heavy periods. I am on an IUD actually now that I'm all done my kids, not for contraception, but just to regulate them a bit more. Good luck - horrible to be in pain like that. I hope you get answers soon.
ETA - just noticed you mention a cyst they discovered via ultrasound. Sorry - missed that part. Did they rule out that the cyst was from endometriosis? You can always get a second opinion just on test results too. Good luck
i am another one saying get a second opinion. i was told that severe pain was not normal and a dr should evaluate it and find why so much pain. if you are trying to get pregnant find an obgyn that assists women who want to get pregnant. they will help make the ttc process easier.
So sorry you are having pain, and don't feel like your doctors are taking you seriously. Late last year, I thought I was experiencing pelvic organ prolapse - I felt like my insides were trying to "fall out of me", and it grew increasingly more uncomfortable, even painful.
My primary doctor referred me to a urogynecologist for further evaluation, and her diagnosis stunned me. Fibromyalgia! I have suffered from that for almost 20 years, but to be told that my body was reacting to it in such a unique way, and that of all things, having sex with my husband was making it worse, was a shock to me. Luckily, there are things that my husband & I have been able to change to make this manageable, & there is also specialized physical therapy.
When I met again with my primary, they had never heard of Fibro causing such symptoms, but not every doctor can specialize in every condition for all aspects of our bodies. In your situation, perhaps you do need to see someone who is more specialized and can approach your diagnosis with a more in-depth examination. Regardless of who you are seeing for your medical care, you should not be made to feel that pain & discomfort is "normal". Women get their periods every month, & are able to function during the 1-3 days of cramping that accompanies it. To have pain that brings you to tears, discomfort that is intermittent throughout the month (not just associated with your cycle), and to have changes in the manifestation of these symptoms is something that needs to be addressed.
Depending on your insurance, you might be able to pick a specialist & see them on your own, or you may need your primary to write a referral. I always look up the bios of doctors before I choose one, so that I feel comfortable seeing them & knowing that they will have an approach that matches my needs for care (ie. bedside manner, specialties of practice, etc.).
One last thing - you have a LOT going on emotionally right now. Worrying about the pains, coming off BC with the intent to conceive, worrying what various diagnoses will mean for your family plans... All of that stress can cause your body to react, & could be making your symptoms worse. Try to find a way to process these issues, & keep your stress manageable - meditation, prayer, social support of friends/family. It will help you now, & as you move forward with all of this. I wish you the best, & hope for positive resolutions! T. :)
IBS with diarrhea. That's what it sounds like.
If you have a laproscopic exam under general anesthesia they can diagnose Endometriosis. That's the only real way they can "see" where the tissue has adhered. I have had my whole insides disconnected surgically but the scar tissue just made everything stiff. They grew back too. It wasn't just Endometriosis but also that I made too much scar tissue.
I suggest you go to a specialist OB/GYN doc specifically for that sort of screening.
You go get a second opinion. Diagnosing oneself if always dicey, and sometimes once we get a possible diagnosis in our heads, we start describing symptoms even more to align with that. It's possible that the doctors don't think your symptoms are due to endometriosis, and maybe they are right. But this level of pain doesn't seem to be "normal" in anyone's book. So if you are in pain in everything you do, from periods to bowel movements, you go get a second opinion and appropriate diagnostic tests from someone in internal medicine or gynecology, with a possible referral to gastroenterology. Ask your doctor for a referral if you are comfortable doing so. Otherwise, if you have a major hospital (especially a teaching hospital) in your area, call and ask for a referral to the earliest available physician.
I read Tara's post with interest. Here's another thing to rule out - neuropathy. I know that sounds strange. But it can cause some really strange symptoms that you would NOT expect. And I know that's really unusual for someone your age, but it's still something to think about.
I would really and truly go to a different set of doctors, T.. To be told it's normal is very strange.
I hope you are taking something to protect the lining of your stomach with all that ibruprophen you're taking. Even eating, it can wreck your stomach. You need to manage that aspect of your health if you're going to continue to take this medicine.
I hope you can get some answers soon! KEEP looking for answers!
If you are having bowel/digestive problems - it's time you saw a gastroenterologist and find out what is causing all the gas and bowel issues.
It may or may not have anything to do with your reproductive issues.
There's such a thing as chronic appendicitis (as oppose to acute appendicitis where they have to take it out asap).
There's just so many things that could be going on in the lower abdomen - it's worth it to find another doctor and see what they have to say about all your symptoms.
I had heavy cramping during my life. They would get better for a while and then the cramping would come back. After my daughter it was easier but they returned.
Some of us just have that composition for cramping. You just stopped taking birth control pills and they have to come completely out of your system. Some of us are able to get pregnant earlier than others after being on the pill for a long time. Consult with your doctors and let them do a workup on your physical system. Self-diagnosing is not something I would want to do. If it does turn out to be endometriosis, then follow the doctor's instructions and get it under control.
the other S.
I had similar symptoms for many years. However, because I'd had allergies my whole life that gave me stomach aches and other digestive disturbances, anytime I'd try to discuss the possibility of endometriosis with a doctor, it was blown off. Well, fast forward into my mid-forties, and guess what? My long-time doctor finally paid attention, and surgery revealed a big case of endometriosis. So, I had several pain-free years before menopause.
It might be worth pushing the point with your doctor, and even changing to a new one. It's my understanding that the only way to confirm endometriosis is through surgery, which is kind of drastic, but imho, would be better than the pain that you experience. The surgery isn't that rough, compared to many others, and the scars are minimal, because they go in through your belly-button.
If it helps at all to know this, I got pregnant on the first month of trying with my son, and second month of trying with my daughter, in spite of about 15 years of endometriosis symptoms prior to the pregnancies.
By all means, get a second opinion. In the meantime, a few things to consider:
- hormones can do crazy things. Your mention of intestinal issues reminds me of me - if I have dairy during my period. It sounds crazy, but I become completely diary intolerant only during my period. Maybe this is totally unique to me, but you might try avoiding dairy during that time and see if it helps.
- if you do have endometriosis, what would you do differently at this moment? The only treatments are meds which prevent conception (like bc pills) and surgery. You can't use the meds because you are ttc. Most doctors don't want to do surgery unless there is no other option, plus you can't conceive if you are having surgery. So, waiting to see if things balance out or to see if you conceive (which would also temporarily solve the problem) is a valid conservative approach, even if you do have endometriosis.
I am sorry you are in so much pain! I would not stop trying to get a better answer than "it's normal." You are your only advocate - if you don't keep trying to figure out what's going on, no one else will.
A friend of mine was just discussing this with me a few days ago. She also has endometriosis that was controlled while on birth control (pill when younger, Mirena after having kids) and has been horrible since she went off the Mirena. She is having surgery in a couple of weeks.
Do you have any family history of cysts, endometriosis or other problems with the female organs? If any of the women in your family have had issues, I would definitely mention that to the doctors as well.
