Almost two years have passed since I moved to the Netherlands and here too already most of my patients suffer from vulvodynia, well, I can't avoid making comparisons.
I’ve learned quickly that the Dutch love protocols, in every field. In the medical field, as under the oath, the approach is to first let the body recover on its own with as little invasive help as possible, so occasionally serious diagnoses are being missed, but statistically it works, and in the case of vulvodynia, in my opinion it’s excellent, as surgical procedures are hardly performed here for the treatment of vulvar pain without an identified cause. Instead, when vulvodynia is diagnosed it is being cared with patience and with noninvasive ways as possible, just as recommended in the review by Andrew T. Goldstein et al: Vulvodynia: assessment and treatment (J. Sex Med 2016).
Until last week, when a former patient (N) approached me to update on her condition, I almost forgot my frustration in Israel when women who were not my patients, asked in the Facebook group I manage of professional support for vulvar and vaginal pain, about surgical operations/procedures after doctors recommended it for treating their vulvar pain, many of them before trying all other options, some without trying any other option.
I did not want to interfere with those women’s decision-making, but on the other hand, I couldn't not say anything in my own group, as once you cut there is NO way back, and there is so much to do before. So I worked hard on raising awareness by talking and writing anywhere I could about the options I saw and heard of being helpful since I started treating it: scientifically proven methods, methods that showed good potential and since hardly any research are made in the field of vulvar pain, also methods that women testified as helpful for them, if it helped one woman it can help another one, right?
Should be noted #1: acupuncture was mentioned as promising treatment for vulvodynia in the review of Goldstein et al from 2016, and a large research is being conducted today by the same researcher whose pilot showed good potential: Dr. Judith Schlaeger from University of Illinois (https://vulvodyniastudy.uic.edu/).
Back to N’: she approached to me after two doctors recommended her two types of surgical procedures, but only the idea of it scared her, so she was willing to try everything. Today she got rid of 99% of the pain without any surgery!
N’ shared her journey with the Facebook support group and gave me her permission to share it outside the group as well, so that her story could reach as many women as possible.
Vestibulectomy is a surgical procedure to remove the painful tissue of the vestibule (vaginal opening) for women suffering from provoked vestibulodynia. Recovery period of the surgery lasting several weeks, and the recommendation is to not overemphasize complications because it is infrequent (A.T. Goldstein et al 2016), only that a new study showed a much higher percentage of complications than what has been published to date. Another disturbing conclusion from the latter study is: “long-term patient-reported outcomes in terms of QoL and pain after surgery do not seem to differ from those achieved conservatively” (Anna P. Aalto et al. Combination of Treatments With or Without Surgery in Localized Provoked Vulvodynia: Outcomes After Three Years of Follow-Up. Biores 2019).
Should be noted #2: surgery resulting without complications is still not a magical treatment that saves time because a long recovery period and rehabilitative treatments are required. Besides, sometimes it does not affect the level of the pain that remains as it was before.
To the best of my knowledge no studies have been published on surgeries or procedures other than vestibulectomy to show effectiveness for vulvodynia to date.
In N’s case, many triggers and/or factors may have caused her unexplained vulvar pain, yet it appears that her emotional state did not let the pain reduce and even aggravated it. When N’ came to my clinic she was already living separately from her husband, even so, she was full of guilt because she believed that her pain was the cause of the failed relationship, while I had a gut feeling that her pain was because of the failed relationship.
Our acquaintance was relatively short, still, I give the needles full credit for her courage to make a decision, more likely to execute what she already knew is best: to get a divorce and allow herself to get rid of the pain later on. I see this quite a lot at the clinic, that suddenly the patient dares to do something that always seemed impossible to her, however this is already a topic for a separate blog.
Should be noted #3: this blog is not against surgeries for vulvodynia, Vestibulectomy has made amazing changes for many women, but I believe that as long as there are other safe and noninvasive methods, the right thing to do is to recommend, research and develop them first, let alone until the surgical procedure is studied with all requirements of a scientific research including a control group.
Remember: once you cut there is no way back!
Here is the translated version of N’s story with the original text in Hebrew below:
(Should be noted #4: N’ did not mention it but acupuncture improved her facial acne state)
"I share my story to bring some optimism and hope for the new year.
It all started when I was suffering from facial acne and a gynecologist recommended I take the contraceptive pills. I took it for 7 years, constantly. Over the years various gynecologists have said that there is no problem in taking contraceptives and that there is no need to take a break.
I am a religious woman so we did not have sexual intercourse until the night of our wedding. Unfortunately during the first penetration attempt I suffered from very severe pain and immediately had a tear at the entrance of the vagina, I went to a doctor who claimed that: you have a horrible fungal infection probably due to years of using contraceptive pills and that the pain during sexual intercourse is due to the fungus. (today I know that the skin in the vaginal opening became very thin due to the use of the pills). In this manner continued two more months of pain and failure in penetration, the fungal infection passed and penetration was not possible.
Needless to mention the mental stress it caused me, the inability to fulfill my husband properly weighed heavily on me. I will not go into detail, because this will be a long manuscript...
But as the months went by, penetration continued to be a painful thing, sex had the appearance of no fun and I couldn't understand women that enjoy it. I was advised to use almond oil, then began a terrible and unbearable itch. In addition to the pain in penetration, I felt burning, and itching as well.
I went through countless doctors to understand what the problem was, why I feel itching, why does it hurt. One said you have nothing, another said the hymen is too thick and not torn and can be cut with a small operation, and all sorts of hypotheses and opinions without a solution.
Pelvic floor physiotherapy was recommended which partially helped. Only when I got to physical therapy, I was asked to stop sexual intercourse attempts for 2 months, as a result I also stopped using the almond oil, and then the itching disappeared. I found out that I am sensitive to almond oil, no doctor has thought of this possibility before.
But, the months have passed, the pain was sometimes worse and sometimes less, and the marriage was faltering. Another doctor told me: you have hypersensitivity of the nerves, you need surgery and a low oxalate diet. The despair was great, the marriage was on the way to falling apart. (And there is no way I am doing surgery, there must be another solution).
I decided to try acupuncture, while searching the web I came across the wonderful Orit who immediately accepted me, in an amazing conversation with Orit (when my marriage depends on whether to stay or cease) she said that sometimes this is the answer to the problem, bad marriage.
Unfortunately, I don't know whether the acupuncture helped or not because I stopped everything, I got divorced. Today, a few years later, I can say that Orit was right. Our body and mind are connected, when the mind feels bad, the body feels bad.
But since I still had mild pain with contact in the vaginal opening, I turned to the amazing Dr. Liora Abramov who saw that there was indeed a point that the nerves were slightly more exposed due to repeated tears (as a result of my attempts to please my ex-husband).
Dr. Abramov recommended a self-care at home method, and I want to share with you that sex can be fun and completely painless!! My problem is 99% solved, and it is on the way to be 100% solved, because when the mind is healthy and the partner fits it’s a pleasurable experience. I wish each of you in the group to have the experience of a healthy and enjoyable sexuality, and a happy new year to all!"
"משתפת את סיפורי בכדי לתת אופטימיות ותקווה לקראת השנה החדשה.
הכל התחיל כשסבלתי מפצעים בפנים ורופאת נשים המליצה לי לקחת גלולות. 7 שנים לקחתי גלולות יסמין, ללא הפסקה. במשך השנים רופאות נשים שונות אמרו כי אין שום בעיה לקחת גלולות ואין צורך לעשות הפסקה .
אני בחורה חרדית אז לא קיימנו יחסי מין עד יום החתונה. לצערי בעת ניסיון חדירה ראשון סבלתי מכאבים עזים ביותר ומיד נוצר לי קרע בכניסה לנרתיק, פניתי לבדיקת רופאה שטענה כי: יש לך פטריה נוראית כנראה עקב שנים של גלולות וכי הכאבים בחדירה נובעים מהפטריה(כיום אני יודעת כי העור בכניבה לנרתיק גם נהיה מאוד דק עקב שימוש בגלולות) . כך נמשכו עוד חודשיים של כאבים ואי הצלחה בחדירה, הפטריה עברה וחדירה לא התאפשרה. מיותר לציין את הלחץ הנפשי שזה גרם לי, ואי יכולת לספק את בעלי כמו שצריך הכביד עליי מאוד. לא אכנס לפרטי פרטים ,כי זו תהיה מגילה ארוכה....
אך ככל שהחודשים עברו, חדירה המשיכה להיות דבר כואב , יחסי מין הצטיירו לי כדבר שאינו מהנה ולא הבנתי נשים שנהנות מכך. הומלץ לי להשתמש בשמן שקדים. ואז התחיל גרד נוראי ובלתי נסבל. גם כאבים בחדירה, גם צריבה, גם גרד.
עברתי אינספור רופאים ורופאות להבין מה הבעיה, מדוע גרד,מדוע כאבים. אחת אמרה אין לך כלום,שניה אמרה קרום בתולים עבה ולא נקרע אפשר בניתוח קטן לחתוך את זה, ועוד כל מיני השערות וסברות ואין פתרון.
הומלץ פיזיותרפיה של רצפת האגן שעזר חלקית. רק כאשר הגעתי לפיזיותרפיה, נתבקשתי לא לקיים יחסי מין חודשיים,עקב כך הפסקתי גם עם השמן שקדים, ואז נעלם הגרד. אני רגישה לשמן שקדים ,גיליתי זאת בעצמי,אף רופא לא חשב על האפשרות הזאת.
אך,החודשים עברו, הכאבים לעיתים יותר לעיתים פחות, והנישואים מקרטעים. רופא נוסף אמר לי יש לך רגישות יתרה בעצבים, את צריכה ניתוח ודיאטה דלת אוקסלטים. הייאוש גדול,הנישואים בדרך להתפרק.(ואין סיכוי שאני עושה ניתוח,חייב להיות פתרון אחר).
החלטתי לנסות את הכיוון של דיקור סיני, מחיפוש באינטרנט נתקלתי באורית המופלאה שמיד קיבלה אותי, בשיח מדהים עם אורית (כשהנישואים שלי תלויים בשאלה האם להשאר או לחדול) היא אמרה כי לעיתים זו התשובה לבעיה, נישואים לא טובים.
לצערי, לא יכולה לדעת האם הדיקור עזר או לא כיוון שעצרתי הכל, התגרשתי. כיום, כמה שנים אחרי, אני יודעת להגיד שאורית צדקה. הגוף והנפש שלנו מחוברים, כשרע בנפש, רע בגוף.
אך היות והיו לי עדיין כאבים קלים במגע בפתח הנרתיק, פניתי לד"ר אברמוב המדהימה שראתה שאכן יש נקודה שהעצבים מעט יותר חשופים עקב קרעים חוזרים ונשנים ( כתוצאה מניסיון שלי לרצות את בעלי לשעבר).
ד"ר אברמוב המליצה על דרך טיפול עצמי בבית, ואני רוצה לשתף אתכן שיחסי מין יכולים להיות דבר מהנה וללא כאבים כלל!! הבעיה שלי נפתרה ב99%,והיא בדרך להפתר ב100%. כי כשהנפש בריאה והפרטנר מתאים, זו חוויה מענגת. מאחלת לכל אחת בקבוצה שיגיע היום שתזכה לחוות מיניות בריאה ומהנה, ושנה טובה לכולן!"
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