Does this sound like endometriosis?
Hello. I was wondering if my symptoms sound like endometriosis. I’ll try to be as brief as possible. For almost two years, I have been having episodes of pelvic pain that I believed were ovarian cysts. There would be a lot of pressure and pain followed by a rupturing sensation that would soon be accompanied by a lot of leg and shoulder pain. The doctors said I likely had PCOS, and I accepted that for a while. However, I also started to notice a strange stinging sensation during my periods with a fair amount of leg and even foot pain. I’ve read the foot pain can happen with endo, so the suspicion was always in the back of my mind. Things took a really scary turn about a month ago. For weeks, I had been having a lot of pelvic pain and pressure almost constantly. Then I started getting very dizzy and having heart palpitations. I also began having severe reflux and constipation. Finally, I woke up in the middle of the night with my heart racing and ended up going to the hospital. My heart rate was around 130, and I had a fever of 100 degrees. They couldn’t find much wrong and sent me home with antibiotics though no infection was actually found. I started bleeding that day and I have never experienced a period as bad as this was. The pain was definitely not cramps. It was a terrifying stinging sensation in my abdomen, back, legs, and feet. I had a lot of dizziness and shaking during the bleeding episode and had to go back to the hospital because of the heart palpitations again. In addition to all of this, I felt like I was getting extremely dehydrated due to excessive urination and I had a headache that was so bad I thought it must be some sort of migraine. Since this episode, I’ve started taking progesterone to try to get the situation under control, but there has still been a lot of pain so far. Any insight/advice would be appreciated.
I am so sorry to hear all of this. I guess I would start with this question: what was happening in your life when your symptoms really ramped up? And have you had any relief of symptoms since your hospitalization?
When the symptoms first started, I was in my second year of law school. There had been strange things happening with my period for years before that, but It wasn’t until November of 2019 that I experienced a period accompanied by an intense stinging sensation. Over the next year, I started having a lot of pain, and my periods were absent for many months. Things did improve for a few months at the beginning of this year, but things started getting bad again in April when there was an episode so intense that I thought I was about to pass out. I felt pretty bad the whole month of April, and I had to have the law school reschedule some of my finals. Despite this, I attempted to start studying for the bar in May even though it felt like I was having episodes almost daily. I had a hard time keeping up with the bar prep course and soon fell behind. Finally, the week I had to be hospitalized, I resigned myself to the fact that I would not be able to take the bar because I was already so far behind and was unsure how much longer this was going to last. Some of the symptoms have improved since then. The heart palpitations have occurred less frequently, and the digestive issues are somewhat better although there is still a fair amount of constipation. The pelvic pain continues to be a problem. A week after starting the progesterone, I started bleeding again. The cramps and leg pain was really intense, and it lasted for over a week. After it stopped, the stinging sensation returned, I feel it in my back, abdomen, and legs just like before. My doctor did say it could take a few months for the progesterone to make a difference. I suspect the period induced by the progesterone likely just set things off again. Maybe things will start to improve soon. I hope so because I have had a lot of anxiety over this last month, and I don’t think I will relax until the pain is gone.
Oh Anna! When I was first starting off in my career after college, I had many strange sensations of pelvic and low back pain, episodes of heart palpitations and horrendous menstrual cycles. I went to many different specialists. One of them, he was a GI guy, actually asked me how I was feeling about my life at the time. I told him I was completely depressed and anxious about starting my life after college. Looking back, I can piece together how my mind state was impacting my physical health.
The abdominal and lumbar pain can be linked to muscular imbalances within the pelvis. I have researched the use of progesterone for women with pelvic pain and the science is fairly positive, though it is as you said: hormone rebalancing takes time.
Constipation is consistent with low back pain and also pain which radiates into the legs. I treat chronic constipation frequently and the nerves that control the bowel are in the same location as the ones which give nerve supply and sensation to the legs and feet.
For many people who describe the symptoms that you are having (which are the same ones I had years ago and were not explained by the medical community), research points to an overactive nervous system which drives all of these disparate symptoms. Once the nervous system calms down, the symptoms should lessen somewhat. The recommendations for an overactive nervous systems are usually daily walks, getting more rest and decreasing too many changes in your life all at once.
In other words, don't beat yourself up for deferring the bar exam. You were taking care of yourself when your body needed it most. I am very proud of you! Let me know if you have any further questions. I remember feeling the same way you feel. It is real and you will get better.Thanks for the advice. I had always assumed the problem was gynecological in nature because I often tend to get strange spotting when the pain happens even outside of my period, but what you are saying about an overactive nervous system also makes sense because I also tend to get strange pains in other parts of my body during the episodes. Usually I will end up getting stinging or burning sensations in my head as well and I’ve never been sure whether they’re migraines or just some sort of secondary reaction to the other pain. Sometimes, the joints seem to act up a little bit as well. It’s all been rather strange. I will definitely do more research about calming down the nervous system. The doctors did mention that they thought I could have some form of dysautonomia in the hospital which is also related to the nervous system, so that would seem to fit a bit with what you’re saying. I was thinking of you this week. I had a patient with pelvic pain who just graduated with her masters degree in Occupational Therapy. She had a lovely week of walking in her graduation gown and had two parties thrown in her honor.
This patient explained how much her GI distress and pelvic/abdominal/low back pain spiked in tandem with this very exciting life event. I explained to her that her nervous jitters about the graduation precipitated the exacerbation of her symptoms.
Our nervous systems react to all major life events, whether they are perceived as positive (planning a wedding, the birth of a child) or negative (the loss of a job or a loved one). Our brains cannot tell the difference between these positive or negative events; only that they cause our nervous systems to go into overdrive.
For people like me and you, our baseline nervous system responses are already high. Throw a bunch of life changes into the mix and the result is a perfect storm.
Sometimes it helps to sit back, get in touch with some quiet (even boredom) and allow the nervous system to settle. I imagine mine like a little toddler who has eaten too much candy. I have to sometimes put her to bed with good books and a glass of water and tell her to be quiet.
She seems to feel better when she rests. I hope your can tell your nervous system to do some routine and easeful activities to get her to comply with what you need the most right now.
Becca Ironside
Oh my nervous system should be plenty bored now. All I’ve mostly been doing is laying on the couch all day. Sometimes, I will listen to a book, but other times, even that seems to be overwhelming to me and I just lay in silence. The bit you said about how positive or negative events both overstimulate our nervous systems reminds me of when I was a teenager and was dealing with something called cyclic vomiting syndrome. Whenever there would be any sort of stressor whether it be good or bad, I would become extremely ill and be so sick for days on end that I could not even hold down water. Eventually I grew out of it, but I do kind of wonder if these symptoms are just a different manifestation of much the same issue.It sounds as though you know your body better than you thought you did...yes, these episodes of vomiting from the past might very well be an explanation of having an overactive nervous system. The symptoms simply changed as you got older. I find that this is especially the case with women. In our twenties and thirties, we have a very different hormonal landscape than women in their forties and fifties who are approaching menopause (like me). Those hormones, or lack thereof, play a powerful role in our stress responses. For instance, many women who take progesterone pills report better sleep after several months of taking them. They need that supplemental dose to enhance relaxation and deep rest.
