To be printed on headed paper

This questionnaire is designed to help you describe your pain symptoms and your health, and how these impact on your life in general. Please read through the instructions at the beginning of each section carefully. For most questions, all you need to do is tick the appropriate box that best describes how you feel. There are no right or wrong answers. We are just interested in your own views about your health, your pain symptoms and how you feel about life in general. Try not to dwell too long on any question, and choose the answer that comes closest to how you have been feeling generally. Please try to answer as many of the questions as possible, even if some may seem repetitive or less relevant. There are some sensitive questions but you can choose to miss out any question you do not feel comfortable answering. Your doctor or nurse who looks at this may make some extra notes on the blank sections marked for them. If you have any queries about the form, your doctor or nurse will be able to help you with them. For any symptoms other than pain, be sure to discuss these with the doctor or nurse you are seeing.

PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Page 1 of 18 Version 2.1 - 27th November 2012 ABOUT YOUR PAIN PROBLEMS

Please describe your pain problems, with the most troublesome problem first.

1. ______2.______3.______4.______5.______

What do you think is causing your pain? ______

Since your previous visit, overall has the pain? (please tick one box) Got a lot Got a little Not Got a little better Got a lot Don’t know worse worse changed better

For approximately how long in total did you have pelvic pain in the last 3 months? (please tick one box) Less than one day a month One day a month 2 – 3 days a month One day a week More than one day a week Every day

2 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 ABOUT YOUR PAIN

Please shade areas of pain and write a number from 1 to 10 at the site(s) of the pain. (10 = most severe pain imaginable

3 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 ABOUT YOUR PAIN There are many types of pain. For each of those list below, please circle the number that best describes your average level of pain over the last month. Also say roughly how many months you have had each type of pain. For example Pain just before period Duratio n No Pain Worst pain imaginable (months )

Now please consider your pain problems. How do you rate your pain, on average?

Pain just before period Duratio n No Pain Worst pain imaginable (months )

Pain during period Duratio n No Pain Worst pain imaginable (months )

Pain when period is over Duratio n No Pain Worst pain imaginable (months )

Pain mid-cycle Duratio n No Pain Worst pain imaginable (months )

If you did not have sexual intercourse in the last month, please tick box and skip this section to go to the next page

Pain at the point of vaginal penetration Duratio n Worst pain No Pain (month imaginable s)

4 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 Deep pain during intercourse Duratio n No Worst pain (month Pain imaginable s)

Burning vaginal pain during intercourse Duratio n No Worst pain (month Pain imaginable s)

Pelvic pain lasting hours or days after Duratio n No Worst pain (month Pain imaginable s)

Other types of pelvic pain in the last month By ‘Pelvic pain’ we mean any type of pain in the lower part of your belly (in the area from your navel down).

Pain when bladder is full Duratio n No Pain Worst pain imaginable (months )

Pain with urination Duratio n No Pain Worst pain imaginable (months )

Muscle/joint pain in pelvis Duratio n No Pain Worst pain imaginable (months )

Pain in pelvis when lifting Duratio n No Pain Worst pain imaginable (months )

No Pain Pain with sitting Worst pain imaginable Duratio 5 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 n (months )

Backache Duratio n No Pain Worst pain imaginable (months )

Migraine headache Duratio n No Pain Worst pain imaginable (months )

DESCRIBING YOUR PAIN The words below describe average pain. Place a tick ( ) in the box which represents the degree to which you feel that type of pain. Please limit yourself to a description of the pain in your pelvic area only. What does your pain feel NONE MILD MODERATE SEVERE like? 0 1 2 3

Throbbing Shooting Stabbing Sharp Cramping Gnawing Hot-burning Aching Heavy Tender Splitting Tiring-exhausting Sickening Fearful Punishing-cruel Melzak R. The Short-form McGill Pain Questionnaire. Pain 1987;30:191-197.

CURRENT MEDICATION

6 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 TREATMENTS FOR PAIN

What types of treatments have you tried in the past for your pain? (please indicate with a tick)

No If yes, was it helpful? No Yes If yes, was it helpful? No Yes No Yes Acupuncture Massage Anti-seizure Meditation or medications relaxation exercises Antidepressants Strong painkillers Biofeedback Nerve blocks Botox injection Non-prescription medicine Contraceptive Nutrition/diet pills/patch/ ring Exercise, yoga or Physiotherapy pilates Hormonal therapy for Psychological endometrisosis (talking) therapy Herbal Medicine TENS Homeopathic medicine Other – please state

......

7 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 ABOUT YOUR PERIODS

Are you still having menstrual periods? No Yes Date of first day of last period? DD YYY

Answer the following only if you are still having menstrual periods: (please tick one box in each section) In the last three months, have you had pelvic pain with your periods? No Occasionally (with 1 in 3 of my periods) Often (with 2 in 3 of my periods) Always (every period) In the last three months, have you had pelvic pain at times other than with periods or sexual intercourse? No Yes, just before a period Yes, just after a period How regular are your periods? Regular, I know when to expect my period Fairly regular, my period starts within a few days of when I expect Irregular, I cannot predict when my period will start I have bleeding on and off all the time My periods are: Light Moderate Heavy Bleed through protection

How many days of bleeding do you usually have each period? (We mean bleeding for which you need a tampon or sanitary pad, NOT discharge for which you needed a panty liner only) ______days How many days between the start of one period and the start of next, on average? ______days Do you pass clots in menstrual flow? No Yes Does pain start the day flow starts? No Yes Pain starts ______days before flow

8 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 PREVIOUS DIAGNOSIS

Has a doctor ever given you a diagnosis of any of the following? (please indicate with a tick)

No Yes No Ye s Endometriosis Uterine or bladder prolapse Adhesions Vulva pain/Vulvodynia Fibroids Irritable bowel syndrome Adenomyosis Nerve entrapment in pelvis/pudendal neuropathy Uterine Polyps Fibromyalgia Ovarian cysts Painful bladder syndrome (interstitial cystitis) Appendicitis Sexually transmitted infection Hernia Female circumcision/cutting Infertility or low fertility

PREVIOUS TESTS

Have you ever had a cervical No Yes If yes, when was your last test (roughly)? screening (smear) test? If yes, what the outcome? Normal Abnormal changes

Have you ever had a Chlamydia No Yes If yes, when was your last test (roughly)? test?

If yes, what the outcome? No Chlamydia Treated for Chlamydia Chlamydia but was not treated

PREVIOUS INVESTIGATIONS/OPERATIONS

Which of the following previous investigations have you had for pelvic pain? (please indicate with a tick)

9 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 N Ye N Ye o s o s Laparoscopy (telescope examination through Laparotomy (open belly) surgery) Cystoscopy (telescope examination of the bladder) Ultrasound via vagina Colonoscopy (telescope examination of the Ultrasound on abdomen bowel) Hysteroscopy (telescope examination via the Nerve transmission test vagina) Magnetic resonance (MRI) scan Allergy tests Other – please state......

ABOUT CONTRACEPTION

Are you sexually active? No Yes If yes, please answer the question about contraception Are you trying for a baby? No Yes If yes, please go to section 14

If you are using contraception, please tick all the methods of contraception you use: No Yes No Yes Patch Female sterilisation (clips) Implant Female sterilisation (implants) Coil (Mirena) Male partner sterilisation Condom Contraceptive pill Diaphragm/cap Mini-pill Vaginal ring Injection Natural method

FERTILITY

Are you currently trying to get (please tick one box) pregnant? No Yes, trying for less than a year Yes, trying for more than a year

OTHER RECENT MEDICAL HISTORY

10 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 BOWEL SYMPTOMS

Do you ever experience rectal bleeding or blood in your stool during your period Yes No

Do you have problems with recurrent pain or discomfort in your abdomen? (please indicate/ tick )

More than 1 year More than 6 months Last month only No

Considering the past 3 months, how often have you had pain or discomfort in the abdomen? (please indicate/ tick ) All of the time Most days of the At least 3 days per 1 day per month Never month month

If you have had abdominal pain or discomfort, is this associated with any of the following

Improvement on going to the toilet to pass stool Yes No

A change in how often you go to the toilet Yes No

A change in the appearance (form) of the stool: Yes No

Rome Foundation Inc. Gastroenterology 2006;20(5):1377-90.

11 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 URINARY PROBLEMS

The following questions are about going to the toilet for a wee. This is also called voiding. Some women sometimes feel a sudden, overwhelming need to go to the toilet. This is called urgency. For each of the following questions, please circle the answer that best describes how you feel.

0 1 2 3 4 1 How many times do you void (go 3-6 7-10 11-14 15-19 20+ for a wee) during waking hours? 2a How many times do you void at 0 1 2 3 4+ night? 2b If you get up at night, to what Never Mildly Moderate Severe extent does it usually bother you? 3 Are you currently sexually active? Yes No 4a IF YOU ARE SEXUALLY Never Occasionally Usually Always ACTIVE, do you now, or have you ever had, pain or urgency to urinate during or after sexual intercourse? Never Occasionally Usually Always 4b Has the pain or urgency ever made you avoid sexual intercourse?

5 Do you have pain associated Never Occasionally Usually Always with your bladder or in your pelvis, vagina, lower abdomen, urethra (the opening from which you wee) or perineum (the area between your front and back passage)? Never Occasionally Usually Always 6 Do you still have urgency shortly after urinating? Mild Moderate Severe 7a When you have pain, is it usually? Never Occasionally Usually Always 7b How often does this pain bother you? Mild Moderate Severe 8a When you have urgency, it is usually? Never Occasionally Usually Always 8b How often does this bother you? Parsons C.L. J Reprod Med 2004;49(Supplement 3):235-42.

12 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 Yes No Do you suffer from pain when your bladder is filling?

13 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 ASSESSMENT OF SEXUAL ACTIVITY

Although the following questions are sensitive and personal, they are important in determining how different tests and treatments affect this part of your life. Please be assured that your responses to these questions will remain confidential. We understand if you would rather not answer these. A) Yes No Are you currently married or having an intimate relationship with someone? Have you changed your sexual partner in the last 6 months? Do you engage in sexual activity with anyone at the moment? If no to this question, please answer section B) If yes to this question, please go to the section C)

B) I am not sexually active at the moment because: (Please tick as many of these items as apply)

I do not have a partner at the I am not interested in sex moment I am too tired My partner is not interested in sex My partner is too tired I have a physical problem which makes sexual relations difficult or uncomfortable My partner has a physical problem which makes sexual relations difficult or uncomfortable Other reasons (please describe) …………………………………

C) Please complete this section if you are sexually active. Please read each of the following questions carefully and tick the box that best indicates your sexual feelings and experiences during the past month. During the past month: Very Somewhat A little Not at much all Was ‘having sex’ an important part of your life this month? Did you enjoy sexual activity this month? In general, were you too tired to have sex? Did you desire to have sex with your partner(s) this month? During sexual relations, how frequently did you notice dryness of your vagina this month? Did you feel pain or discomfort during penetration this month? In general, did you feel satisfied after sexual activity this month? How often did you engage in sexual activity this month? 5 times 3-4 times 1-2 Not at or more times all

14 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 How did this frequency of sexual activity compare with what Much Somewhat About Less more more the than is usual for you? same usual

Were you satisfied with the frequency of sexual activity this Very Somewhat A little Not at much all month? Stead M.L. et al. Br J Obstet Gynaecol 1999;106(1):50-4.

HOW DO YOU COPE WITH PAIN?

Over the last month, how often have you: Never Rarely Sometimes Often Always Found it difficult to walk because of the pain Felt as though symptoms were ruling your life Have had mood swings Felt others do not understand what you are going through Felt your appearance has been affected

Jones et al. Quality of Life Research 2004; 13:695 -704

Of all the problems and stresses in your life, how does your pain compare in importance? Please make a mark on the line to describe your pain Just one of The most important many problems thing

Over the last two weeks, how often have you been bothered by the following? (please indicate ) 0 1 2 3 Not at all Several days More than half the days Nearly every day Little interest or pleasure in doing things Feeling down, depressed or hopeless Kroenke et al Med Care 2003,41:1284 - 1292

15 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 GENERAL QUALITY OF LIFE

By placing a tick in one box in each group below left, please indicate which statements best describe your own health state today.

16 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 Mobility I have no problems in walking about I have some problems in walking about I am confined to bed

Self-Care I have no problems with self-care I have some problems washing or dressing myself I am unable to wash or dress myself

Usual Activities (e.g. work, study, housework, family or leisure activities) I have no problems with performing my usual activities I have some problems with performing my usual activities I am unable to perform my usual activities

Pain/Discomfort I have no pain or discomfort I have moderate pain or discomfort I have extreme pain or discomfort

Anxiety/Depression I am not anxious or depressed I am moderately anxious or depressed I am extremely anxious or depressed

The EuroQol Group. Health Policy 1990;16(3):199-208.

By placing a tick in one box in each group below, please indicate which statements best describe your own health state today:

17 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012 1. Mobility I have no problems in walking about I have some problems in walking about I am confined to bed

2. Self-Care I have no problems with self-car

I have some problems washing or dressing myself

I am unable to wash or dress myself

3. Usual Activities (e.g. work, study, housework, family, leisure activities)

I have no problems with performing my usual activities

I have some problems with performing my usual activities

I am unable to perform my usual activities

4. Achievement and progress I can achieve and progress in all aspects of my life

I can achieve and progress in many aspects of my life

I can achieve and progress in a few aspects of my life

I cannot achieve and progress in any aspects of my life

5. Enjoyment and pleasure I can have a lot of enjoyment and pleasure

I can have quite a lot of enjoyment and pleasure

I can have a little enjoyment and pleasure

I cannot have any enjoyment and pleasure

ICECAP-A measure V2 © 2010 Hareth Al-Janabi and Joanna Coast

18 PELVIC PAIN ASSESSMENT - Form 2(b) Patient re-entry Version 2.1 - 27th November 2012