Tag: skipping your periods

Progestin making you bloat?

One of the messages that I try to convey to my readers is that you MUST listen to your body. The other message – which is a mucher harder one to convey and certainly harder for my readers to follow through on – is to be your own advocate. Sometimes your physicians are not as educated about hormones and birth control options as they should be. But as a sufferer of endometriosis you know that birth control is the first line of defense for reducing period pain. In some cases, its used to abolish your period altogether so that by eliminating your cycle, you eliminate the pain that comes with it.

The first time I went on birth control was at the age of 14. Birth control in the late 90’s were not what they are today. I mean, for the most part it was just a bunch of hormone and a whole lotta side effects. I gained about 40 lbs and that is NOT the age you want to be feeling overweight. I stopped taking the pill out of self consciousness but eventually resumed the pill a year later simply because the pain was too unbearable. Nevertheless I have been on many forms of birth control for over 20 years. Some worked, others didnt, and sometimes they start out working but lose its efficacy over time.

After my second lap in March 2018 I was put on Visanne. Technically I was supposed to go on it before my surgery but I forgot (oops!). The idea with Visanne is that its a progestin-only oral pill, so the goal is to reduce the estrogen in your body and hence reduce the bleeding/pain and growth of endometrium (which is found in your uterus) and endometrial lesions (potentially outside of your uterine cavity). In addition, I was asked to take them continuously to abolish my cycle altogether. It didn’t work!!!! Not only did it NOT WORK but it made me feel bloated and gross and unattractive. Over the course of 6 months I was having constant endo-belly. I mean, everyday, all the time. I literally had to buy a whole new wardrobe to accommodate my wider midsection. Ladies this is not the way of life!! So I did what no patient should do… I stopped taking it and switched to the pack of old birth control pills I was taking (and loved!) before my surgery. I knew it was only a month before I was scheduled to see my new specialist so really, what could be the harm? Initially I think the results were psychosomatic but I instantly felt more human. Then, the physical symptoms followed. The bloating over the course of 1 month was dramatic. Well,.. at least it felt dramatic.

 

 

 

 

Once I was able to sit down with my new specialist (new because I moved across the country from Vancouver to Ottawa), we looked at the big picture. Not only was visanne not impacting my hormone cycle, but it was bloating me. Then you add in that I have ulcerative colitis and it paints a better picture of why my body may not be absorbing the pill format of the hormone. That’s when we brought in Mirena – a progestin-only IUD. Without going into details about the procedure or the discomfort, the fact of the matter is Mirena is doing what its supposed to do. Month over month my periods are lighter. I’ve heard it takes about 7-8 months before its completely unnoticeable but I’m not there yet. I still feel period cramping without the bleeding, but i’m only 4 months in. Moreover, the progestin in this format is isolated to my pelvic cavity which means it doesn’t have the opportunity to bind to progesterone receptors near or on my gut. I’ve had zero bloating (minus the occasional endo belly which I mitigate with my diet) for 3 months at least.

Remember. The goal is to listen to your body and challenge your doctor when you KNOW your quality of life is not optimal. Think outside the box. Read up on options and present them to your doctor. And above all, if you ever have any questions please message me. You can email me, or DM me on social media (@crampmystyleblog).

This is me today!
by Categories: endometriosis journeyTags: , , , , , , , , Leave a comment

Listening to my body – part 2

It’s hard to tell whether I will lose some followers on this one, just because of how complicated this journey is getting. So I left off on part 1 telling you that my 1) entyvio infusions were being moved from 8 weeks to every 4 weeks 2) Im due to meet my Endo specialist and 3) I’ve taken the liberty of switching off of progestin-only Visanne (oral birth control) to a estrogen-progestin oral birth control called Minovral which seems to be keeping me on my cycle and has reduced my endo-belly.

Let’s start off with my endo visit exactly a week ago. For the sake of public scrutiny I will avoid mentioning names of my doctors. Let’s call my Endo specialist ‘Dr. E’ for now. Skipping ahead past the routine questions, Dr. E had a resident doctor come assess me first. To be fair, I took a cancelation endoscopy for an hour after this appointment so the doctors were rushing on my accord. The resident was interested in my birth control path, and agreed that putting myself on some form of birth control was the right idea, and certainly if Minovral had helped me in the past it was a good option. She also reiterated that I would use it to skip my periods as I had been, to reduce the ‘cycle’, and eliminate the bleeding which in turn should reduce new endometrial growth. This is key to the understanding of how the disease works. However, where we disagreed is her plan to attack the pain. She was comfortable assessing whether the birth control itself would reduce the pain and then we could address next steps in two weeks. My thinking was that birth control hadn’t worked in the past, Visanne certainly didn’t work, so going back to birth control as the line of defence was practically moving backwards. She called in Dr. E to help with the issue. I wasn’t being irate, I was being rational and she appreciated this. Meeting Dr. E was like meeting a celebrity. He has a fantastic reputation in the community and has overcome tremendous feats for women suffering from endometriosis that I was admittedly somewhat star struck when he walked into the room. Mom helped me gain my composure to address the pain question and this prompted him to get me to lie on the table and see where the pain is located.

Upon inspection I was able to show him that my lower left side, right around where my stitch for the ovarian suspension was, always hurts. Always. Every examination Ive had since my excision in March has resulted in me wincing in pain every time a doctor pokes in that general area. This was a red flag for Dr. E. He then asked me where my upper pain resided so I showed him the right side under my rib (which one could say is my right side of my diaphragm). Practically, this would align with the diaphragmatic endometrial lesions that were cauterize during my excision. Scientifically however, lesions on the diaphragm (so I learned) do not express pain on the diaphragm but refer pain to the right shoulder. This is where we paused for scientific clarity.

In Dr. E’s opinion, one should be pain free 6 months to a year after a thorough excision like the one I had. While the cauterizing did not effectively remove the endo on my diaphragm it should have – along with skipping my periods – significantly halted any growth or spreading of those implants. Dr. E also mentioned that doing surgery on a patient is usually refrained from IF the patient has NOT had this time frame (at minimum) of no pain, as it may point to other explanations of pain rather than it being a direct cause of the implants. Yikes. We agreed that we would order some scans to physically examine the state of the implants (for preparation of any future surgery) but that our primary goal (kind of what I was gunning for in the first place) was to address the pain.

Here is where my life turned upside down. Dr. E told me that there is a Neuroscientist who believes the body can learn to address pain in a constant fashion, even when the body doesn’t meet protection. For more information on this concept, Dr. Lorimer Moseley has created this fabulous video called “Tame the Beast”. (This link will open the video in a new window). Under this concept, Dr. E has administered a pain blocker to many women like myself who are feeling pain in an area that is perfectly healed and not in danger. With my eagerness, Dr. E’s Resident administered two long needles into my nerves associated with this over-firing of pain. It was such a weird feeling. Ugh! I was told that if it is the problem, I should get a rise in pain initially and then the pain should go away within 24 hours, for 4-6 weeks! Note that the pain did go up after the injections but only if I really pressed on the nerves. The pain went away 100% after the first 24 hours and I can happily report there has been no pain for ONE WHOLE WEEK!!!! With regards to the upper pain, the theory is this could also stem from the same problem but given its complex location I would need to be given a neuromodulator (similar overall function of the pain blocker). BUT we decided to hold off as this area is still under scrutiny by my GI.

Perfect Segway…

After this appointment to which I was numb from emotion, I quickly drove over to the hospital down the street for my endoscope. So, this was ordered by my GI (Lets call him Dr. G) to reexamine my pancreas and get to the bottom of this recurring acute pancreatitis. In some ways this would also help to rule out the theory of endometriosis on my pancreas but the rest was up in the air.

When I was about to be sedated the GI (Call him Dr C), asked me if the episodes of pancreatitis ever happened before I started on entyvio. The answer was no. He then told me that a recent publication (2018) showed 4 cases – two adult and two paediatric – of pancreatitis linked to Entyvio (Vedolizumab) and he suspects this may be the case with me. The endoscope was quick and dirty. When I started to come out of the fog, Dr, C waited behind to explain to me that the endoscope looked fine: no inflammation on my pancreas, no scarring, no signs of damage. This substantiated his theory that it could be from my medication and that if my infusion frequency has been moved to every 4 weeks this could exacerbate the pancreatitis. On this front, I have left it to Dr. C to let Dr. G know, and contact me for next steps. The challenge there will be having to take me off a medication that is working for my Colitis and figuring out which other medication will work.

Stay tuned for part 3.

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , , , , , , , Leave a comment

Skipping my period – the journey

Skipping Menstrual Periods Because of Endometrial Pain

After seeing an Endometriosis specialist in July, it was clear that my pain pathway was undeniable, and that the endometriosis was in fact back with a vengeance. Not only is my endo on both tubes, but the left tube is so sticky that is affecting my left sciatic nerve. This helps to explain the painful friction start to feel after only 10min of walking. Poking on my sciatic nerve through my butt cheek made me wince so hard, and in fact was a confirmatory moment in the re-diagnosis. Moreover, the endo IS on my diaphragm! This was the main reason I sought out to be treated at the clinic – to confirm I wasnt insane and to get some help with pain management.

I cried a lot before my appointment because I was worried I would not be taken seriously due to the fact that I am not trying to have a baby. I didnt want to be dismissed, and I certainly did not want the only option to be Lupron or other strong medications that would give me more side effects. But to my surprise the appointment was amazing. The doctor was very knowledgeable and looked into explaining all of the pain symptoms I am experiencing by triggering several places along the pain pathway. This helped us indicate which areas on the abdomen we problematic, how high up the endo is, and how severe the uterus is being affected.

The first step in treatment is to take my birth control continuously for three months to see if this reduces the pain by eliminating my periods. I was warned that spotting might occur, and pain may accompany, but that it would likely be due to the endometrium thinning out (which exposes the veins). The first few weeks went ok. By my calculations I was effectively able to skip one menstrual period without any hiccups. But about three weeks in I started bleeding; slow at first and then became clear that is was a period and not spotting. I went back and calculating when I was supposed to have my period just to make sure I wasnt just screwing up the math, but I confirmed this was not when I was supposed to bleed. The bleeding persisted – at full capacity – for two straight weeks, with tons of abdominal and diaphragmatic pain, and absurd facial acne. I was bed ridden for two whole days, and for the first time in my life, threw up because of the pain severity. (Throwing up in restaurant bathrooms is the worst!). And I was unable to clear my skin with any store-bought or natural products.

Finally a break… for 4 days, with a significant reduction in the acne, but the bleeding has continued again. I called the clinic nurse and she said I could either stop the pill for a few days to let my body bleed it out but this might create a lot of pain. OR I could wait a few more days and call back to switch to a stronger pill. On one hand I dont want to stop the pill because that might erase the 1.5 months I just put in. On the other hand I am already on a strong pill so what will more hormone do to me? Yes, I want the pain and bleeding to go away but sue me,… I also dont want to grow a beard. Is that so wrong?

I have chosen to continue on the pill and will call the nurse in 3 more days. Still bleeding, still in pain, the acne is back, but cant bring myself to stop now.

by Categories: endometriosis journeyTags: , , , , , , , , , Leave a comment

Step 1 – skipping my periods

After meeting with the specialist we determined that the first plan of action would be to take my birth control pill consecutively for three months, with no breaks in between, to see if the pain would decrease. I have always been skeptical of this plan because knowing the science behind the menstrual cycle I thought a women would have to shed her lining if in fact it was thickening every month. But the specialist informed me that recent research has shown over time the body realizes it is not going to have a period and therefore the hormones normalize and reduce the thickening. There is no longer a ‘cycle’. Without the changes in hormone and the need to have my period it should reduce the swelling all over my body where the endo tissue is, and should level off the pain. But there is a good chance it wont work so surgery is step #2.

For anyone who is trying this method, here is what happened to me. My body was PMS’ing like normal with bloating and cramping before I was supposed to start bleeding. The first three days of my period I did not bleed but my body has gotten more and more exhausted/confused. Im on day 4 – still really tired but no pain and no bleeding. Im optimistic!

by Categories: endometriosis journeyTags: , , , 3 Comments