How to make healthy decisions about sex when you are in pain from Bleb Disease: Using a Bleb pain scale and sexual activity table (from The Center for Growth in Philadelphia)
People with “bleb disease” grow blebs on their lungs. Blebs are weak spots on the lungs which can cause lung collapses if they rupture. If you have “bleb disease,” only you can determine if the pain you are experiencing is standard or a sign that your condition is getting worse. If you have sex while you are in pain this could make your pain worse. Perhaps you would only be in additional pain for an hour or two, or maybe for several days. In addition, if you push yourself physically when you know a bleb is leaking air you could be putting yourself at risk for a collapsed lung. Obviously the stakes can be high when deciding whether to engage in a particular sexual activity. To help you learn how to decide what the right decision is for you and your body you will need to use our Bleb Pain Scale, keep a Pain Journal & create a Sexual Activities Table.
Bleb Pain Scale. Making a Bleb Pain Scale is a useful way to articulate and track your level of pain. Learning how to identify and communicate your sensations helps you stay safe, making sex more fun for you and your partner. As you create your pain scale, remember that the pain scale needs to reflect the reality of your condition. The severity of your condition and the amount of chronic pain you experience on a daily basis will influence your pain scale. The results of the actual pain scale may change on a day to day basis, but over time patterns will emerge. Additionally, a Bleb Pain Scale is not a typical pain scale, as it is designed for people who have bleb disease.
Step 1: Familiarize yourself with the general format. The Bleb Pain Scale is a scale from 0 to 100. Experiences closer to 0 represent experiences with less pain while experiences closer to 100 represent experiences with more pain. In addition to assigning a number to your level of pain, you will always indicate the type of pain you are experiencing. Type of pain can be an important indicator about what is going on with you physically. Types of pain that are included in the Bleb Pain Scale include: shooting pain, dull pain, achy pain, throbbing pain, traveling pain, stinging pain, stabbing pain, and cramping pain. If your particular type of pain is not mentioned, simply add the term to better describe the sensations that you are experiencing.
Step 2: Assign the extremes. Number 0 on the Bleb Pain Scale represents being totally pain-free. This may be unattainable for some people with Bleb Disease. However, it is still important to have this including on the pain scale for reference and to make you more aware of the times when you are pain-free or close to being pain-free. The number 100 represents the worst pain ever imaginable. Generally, pain from 90-100 is so severe that you need to be hospitalized.
Step 3: Reflect on your low pain experiences. Consider that 50 is moderate pain. Right now you should only focus on your pain experiences 50 and under. Reflect on the pain experiences you have had in the past that fall into this category. While the memory of these experiences will not be completely accurate, these experiences can serve as indicators for the time being of a pain experience at a 30 versus a 45 for instance. Try to describe at least 7 pain experience in no less than two sentences for 50 or under. Remember to include the type of pain you experienced as well.
Step 4: Reflect on your high pain experiences. Again consider that 50 is moderate pain. Now focus on only your pain experiences of 51 or higher. Again reflect on pain experiences that you have had in the past that fall into this category keeping in mind that your memory of these experiences will not be entirely accurate. Describe at least 7 pain experiences in no less than two sentences for 51 or higher. Be sure to include the type of pain you experiences as well.
Step 5: Review your Bleb Pain Scale. The Bleb Pain Scale is reflective of your personal experience of your condition and pain related to your condition. You want to make sure that you have been descriptive as possible to flush out your range of experiences with pain. Reread your scale now that is completed and make appropriate adjustments or additions that more accurately reflect your experience.
Example of a Bleb Pain Scale
0 - pain-free.
6 - Essentially pain-free. My typical day of being pain-free before bleb disease before age 16.
15 - Very low pain that is brief. An example of a 15 for me would be several months ago when I had a dull achy pain in my shoulder blade for just a few minutes after moving some furniture around.
23 - Generally still low pain that is brief. An example of a 23 for me would be the dull achy pain I experienced in my left shoulder for thirty minutes the day after playing tennis for a half hour.
30 - A 30 for me would be when I am having a “good nerve damage day,” meaning that my nerve pain is less than what I typically experience. Generally low dull and achy pain in my ribs.
38 - When I am having an “okay nerve damage day,” meaning that the pain I experience is still less than average but more than a “good nerve damage day.”
43 - The dull and achy pain I feel in my ribs on a daily basis from nerve damage I sustained three years ago from a pleurectomy.
47 - An example of a 47 for me was last year when I had a leaking bleb for about one day where my nerve damage felt more painful than normal and I experienced moderate cramping pain in my chest and back.
50 - moderate pain.
58 - A flare in my nerve damage. Significant dull and achy pain in my ribs that can last nearly all day.
63 - A 63 for me is when my nerve damage feels worse than normal. The dull and achy pain that is in my ribs is also accompanied by occasional sharp shooting pain.
67 - Moderate cramping and achy pain in my chest and neck like when I had a leaking bleb off and on for about one day last winter.
73 - An example of a 73 for me would be significant cramping and achy pain in my chest and neck like four years ago when one of my blebs had been leaking off and on for about five days.
85 - Significant stabbing and cramping pain like when I experienced my first lung collapse at age 17. This lung collapse was slightly less painful than the one I experienced three years ago.
93 - Severe stabbing pain and cramping pain in my chest like when my lung collapsed three years ago.
95 - Horrible stabbing and shooting pain. An example of a 95 for me would be when the doctors inserted a chest tube to treat my collapsed lung three years ago.
100 - worst pain imaginable
Pain Journal. Purchase a notebook or a journal. Print out your Bleb Pain Scale and paste it in the front of your journal for reference. While it may seem excessive you should take note of your pain at least three times a day, some people notice their pain changes throughout the day. It is also important to track your pain at this frequency because you can reflect back on your entries and see connections to conditions or activities that may have later influenced your pain or physical reaction. Note your pain in the morning, midday, and evening. Make sure to include the following things in your entry: date, time, pain, weather, mood, general activities, and sexual activities. To save time, make a table with the categories below and print out copies to place in your journal. If you’re not technologically challenged make an excel spreadsheet or an application for your smartphone to enter the data. All of this information will be important as you learn more about your pain and how to make more informed decisions about sex. It is especially important to note the details of any sexual activities you engaged in. This will help you learn what sexual activities are most enjoyable and do not increase your pain. Your pain journal will also help you make informed decisions about sexual intimacy, whether with a partner or masturbation.
Entry Template Date: [day, month, year] Time: [00:00 AM or PM] Pain: [0 to 10 on your Bleb Pain Scale] Weather: [conditions and atmospheric pressure…some people with bleb disease notice a difference in their pain levels based on the weather, as changes in atmospheric pressure can effect blebs] Mood: [emotional or psychological state] Thoughts About Partner: [feelings or attitudes about or towards him/her] General Activities: [physical activity other than sex] Sexual Desire: [none, low, moderate, high] Sexual Activities: [make sure to include a range of intimate and sexual activities]
Example of a Pain Journal Date: 07/11/2011 Time: 8:15AM Pain: 3 Weather: sunny, 80 degrees Mood: content, relaxed Thoughts About Partner: Annoyed, Irritated, Wanting distance General Activities: 20 minutes light bike ride Sexual Desire: none Sexual Activities: none
Date: 07/11/2011 Time: 1:30PM Pain: 5 Weather: thunderstorms, rainy, 80 degrees Mood: annoyed due to work situation Thoughts About Partner: Minimal General Activities: on my feet all day at work, lots of running around Sexual Desire: none Sexual Activities: none
Date: 07/11/2011 Time: 7:45PM Pain: 5 Weather: cloudy, 76 degrees Mood: a bit stressed from work Thoughts About Partner: Wanting a connection, feeling insecure General Activities: cooked dinner, vacuumed Sexual Desire: low...partner wanted to but I was just not in the mood, likely due to work, not lung related Sexual Activities: kissing, cuddling, but I didn't let it go further than that because I was not feeling sexually turned on
Examine your Pain Journal. Examine your journal after a month, after three months, at six months and after a year. To discover patterns related to your pain, ask yourself the following questions each time you review your journal:
Questions about the weather and pain:
- How do weather conditions relate to my level of pain?
- How do changes in atmospheric pressure influence my level of pain?
Questions about mood and pain:
- When I am in less pain (below my baseline) what moods am I more likely or less likely to experience?
- When I am in greater pain (above my baseline) what moods am I more likely or less likely to experience?
Questions about general physical activities and pain:
- Which general activities seem to increase my pain?
- Have no effect?
- Decrease my pain?
Questions about sexual desire and pain:
- When I am more likely to experience sexual desire?
- When am I less likely to experience sexual desire?
- How does pain or mood relate to my sexual desire?
Questions about sexual activities and pain:
- When I am a [go through each number on your Bleb Pain Scale] which intimate or sexual activities seem to have little impact on my pain level?
- When I am a [go through each number on your Bleb Pain Scale] which intimate or sexual activities seem to increase my pain?
Questions about mood and desire in relation to my partner:
- How does my mood influence my sexual desire for my partner?
- How does my mood influence my sexual behaviors with my partner?
- How does my pain influence my sexual desire for my partner?
- How does pain influence my sexual behaviors with my partner?
Sexual Activities Table. This table can help you determine how certain sexual activities based on your pain level may impact your pain and overall condition. To begin making a sexual activities table revisit your pain journal and consult with your partner. For each sexual activity give a corresponding Bleb Pain Scale number that represents the highest level of pain you can tolerate and still desire to engage and engage in the activity safely. Be creative. Add in activities ranging from intercourse to spooning. Be very specific. In addition, based on your findings each time you review your Pain Journal, modify your sexual activities table. When you review your Pain Journal make sure to examine how specific sexual activities impacted you both immediately after but also an entire day after. Consider several conditions when rating your sexual activities:
- Sexual activities that do not require you to use a lot of upper body strength may be easier to engage in when you are experiencing higher levels of pain.
- Sexual activities in which you can relax and be in the receiver role may be easier to engage in when you are experiencing higher levels of pain.
- Engaging in intimate activities that do not involve direct stimulation of genitals when in high levels of pain may be easier.
- Sexual or intimate activities in which you can control the rate of your breath and be more relax will likely be easier when experiencing high levels of pain.
Example of a Sexual Activities Table Cuddling on the Sofa: 83 Holding Hands: 85 Light Kissing: 85 Taking a Bath or Shower Together: 80 Mutual Masturbation: 78 Receiving a Hand-job: 80 Heavy Kissing: 79 Giving Oral Sex: 75 Receiving Oral Sex: 80 Missionary Position: 70 Doggy Style: 68 Spoons Position: 75 Cowgirl Position: 77 Sitting/Kneeling Position: 73 Standing Position: 65 T-square position: 77
Remember... The Bleb Pain Scale, Pain Journal and Sexual Activities Table are interconnected and information you gather for one will influence the other. You will have a better understanding of your condition and how it effects you if you can complete these three activities. In addition, you will be able to make healthier decisions about your sex life and will be better able to communicate with your partner about how various activities may impact you. It is possible to have a healthy and happy sex life even with bleb disease! Use these activities to help you get to that place!