Treating Infertility with Specialized Pelvic Therapy: A Natural Approach That Works

Published on July 7, 2021

5196 views

treating infertility with specialized pelvic therapy

In a 10-year study of 1392 infertile women, manual physical therapy yielded high pregnancy rates for women in three categories of hormonal infertility. Subsets of participants showed success for women with endometriosis, polycystic ovarian syndrome (PCOS), and high FSH (follicle-stimulating hormone).
The therapy was originally designed to treat pain due to the adhesions that form when the body heals. Adhesions tend to remain in the body, acting like an internal glue after healing has occurred. Adhesions can act like tiny straitjackets, causing pain or dysfunction – including infertility.

Endometriosis adhesions

Endometriosis, Infertility and Adhesions

Endometriosis is considered both a mechanical and a hormonal condition, with adhesions frequently accompanying endometrial implants. The therapy is designed to decrease the cross-linking, the tiny but powerful white attachments shown in the drawing. In the 10-year study, 43% (128/299) of the women diagnosed infertile with endometriosis became pregnant after receiving the therapy. This rate compares well to surgical success rates, but without the costs or risks of surgery.

PCOS and Infertility

In the study, 54% (15/28) of women diagnosed infertile with polycystic ovarian syndrome (PCOS) achieved pregnancy after therapy. While this is a smaller subset, this rate is encouraging; it is much higher than the 22% to 33% pregnancy rates achieved after surgeries cited in the study. In surgery for PCOS, the physician will either drill holes in the ovary or remove a wedge-shaped portion of the organ. One reason for the low pregnancy rates after PCOS surgery may be the new adhesions that form as the body heals from the surgery.

High FSH Infertility

pregnancy rates for women with high FSH One of the biggest surprises in the ten-year study was in women who were diagnosed hormonally infertile due to high FSH (follicle-stimulating hormone). As a woman approaches menopause, her ovaries demand more and more FSH to stimulate egg growth in older follicles. Measured early in the menstrual cycle, most physicians feel a woman’s FSH levels should be at or below 10 mIU/mL. When a woman’s FSH is above 10, she is considered unlikely to conceive. At FSH of 25, the woman is generally considered to be menopausal.

In the 10-year 2015 study, a surprising 39% (48/122) of women diagnosed subfertile or infertile due to high FSH became pregnant after receiving the therapy; 43 of the pregnancies were natural, and five were by follow-up IVF.

“The data with these women has been absolutely remarkable” said Belinda Wurn, director for Clear Passage Physical Therapy. “Before this study, nothing in medicine has been shown to improve FSH and fertility naturally. Until now, none of us imagined that a manual therapy could have such profound effects, without surgery or drugs.”

The therapy (Clear Passage Approach™) is available at a dozen locations in the U.S. and the United Kingdom. Treatment consists of 20 hours of hands-on care described as “feeling like a deep, site-specific massage.” The therapy is often given 4 hours a day for 5 days. For more information, visit clearpassage.com.

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This article was published originally on August 15, 2017.

Endometriosis: The Struggle to Find Effective Care

by Jess Boisjoli

Published on April 12, 2016

1933 views

I have a horrible disease called endometriosis. It has completely destroyed my life in every way possible. I am 29 and going through menopause with no children and no chance of having my own children. My body is full of scars from multiple failed surgeries and from unbalanced hormones.

Endometriosis has caused me to feel like less of a woman and has made feel extremely insecure. It has taken all of my energy to focus on getting through the pain, rather than taking the time to enjoy life and figuring out who I am besides a woman with endometriosis. I have not been able to lead a normal life due to the extreme chronic fatigue and daily unbearable pain I have suffered since the age of 15.

Several Years of Misdiagnosis

At 15 I was misdiagnosed with irritable bowel syndrome (IBS), which complicated my chances of receiving an early proper diagnosis of my endometriosis. It started out with heavy painful periods, accompanied by washroom issues that kept me from school a couple days to a week at times. It then escalated to stabbing, throbbing pains in my abdomen as well as a crushing pressure type of pain in my legs on a daily basis that would just drop me to my knees and render me incapacitated. The pain was so bad that just putting on and wearing clothes was painful. Just the slightest touch or brush of clothing or anything to my abdomen would increase the pain level.

I had several visits to the hospital due to immense pain that ended in the dispensing of unnecessary prescriptions related to IBS. I was not given the proper examinations or tests to determine my actual underlying problem. It was not until I was 18 and another regular visit to the hospital that they finally believed there was something else that was causing my pain. They had figured I was 5 months pregnant due to an extremely distended abdomen. Despite telling them it wasn’t possible because I had not been sexually active, they still gave me a pregnancy test, which did indeed come back negative. An emergency ultrasound showed an endometrioma cyst that was almost 9 inches in diameter containing blood on my right side and a 2 inch cyst on the left side. I had emergency surgery in which the larger cyst, my right ovary and tube were removed immediately.

Finally, a Diagnosis

I was diagnosed with stage 4 endometriosis. One of my many doctors had assumed that the endometriosis had been growing since puberty at the age of 9. Other doctors believe I could have been born with it. Once diagnosed, I went through every type of medical and alternative treatment, as well as failed surgeries, and failed cyst drainings.

My endometriosis kept coming back and started to cause even more damage. I ended up with another very large cyst on my left side. The cyst had become so large that it had physically pushed some of my organs out of place and had begun to crush others. I also had adhesions–web like tissue that had begun to bind my organs together and to the cyst.

Trying to Find Effective Care

I went through several doctors, who in the end had done all they could for me. They told me that they were not skilled enough to deal with my case, and so I was passed on to the end of the line in my city, which was cancer care. They offered me a hysterectomy and removal of my last ovary, but not removal of all of my endometriosis, because they told me that was impossible to do. They told me that this surgery probably wouldn’t help, they said it was the only option I had left.

It was around this time that a friend and I had decided to start a support group because we felt so alone and frustrated with the lack of options and awareness in our province (Manitoba, Canada). We found out that there was a surgical method called excision that if done properly can remove most if not all of the disease and have little to no recurrence. This type of surgery was not offered by any surgeon in Manitoba.

Excision Surgery in Mexico

I decided to look into these specialists around the world. I ended up speaking with some in Canada, the U.S., and Mexico. I had been approved by Manitoba health insurance to see a specialist outside of Manitoba because of the severity of my disease. However, the wait was too long so I ended up going to Mexico instead. I had a 6 and a half hour excision surgery which resulted in the removal of my last ovary, but I did not need a hysterectomy and was able to keep my uterus. I have been pain free for almost a year now, but I am now dealing with the effects of surgical menopause at the age of 29. Even though the pain is gone I will constantly live with the damage that endometriosis has left me with.

Facilitating Support, Education and Awareness

I have been dealing with endometriosis symptoms and its effects for more than 11 years. It wasn’t until a few years before my last surgery that I was able to form a strong support system. Knowing what it felt like to go through most of my journey misunderstood, alone and confused, I have vowed to spend as much time as possible spreading awareness, education, and bringing women together so that no one has to go through what I did alone. I started an endometriosis support group in Manitoba with a friend of mine called W.O.M.E.N (Women of Manitoba Endometriosis Network). Recently we have also come together with The Endometriosis Network Canada to have our very first awareness day in Winnipeg on May 7, along with 16 other cities across Canada.

From what doctors have told me, had I been diagnosed earlier and had the proper excision surgery I probably would have been able to have children, and would not have had to go through so much suffering and unnecessary treatments. The pain of the disease may be gone for me but I will never be able to forget what is has done and taken away from me.

Hormones Matter Top 100 Articles of 2015

by Chandler Marrs, PhD

Published on January 4, 2016

3202 views

Happy New Year, everyone. We have another remarkable year under our belts. Hormones Matter continues to grow month after month. This year, despite the site being down for a month in September, we had over 815,000 visitors, most staying quite a while to read our articles.

Since inception, we’ve published close to 900 articles, many are read by thousands of readers every month. The hysterectomy and endometriosis articles continue to draw large crowds, demonstrating the great need for information in these areas of women’s health.

Our success is thanks to a fantastic crew of volunteer writers who spend countless hours researching complex medical topics, making connections, identifying unconventional therapeutic opportunities, and bringing to light, what are often, invisible illnesses. Without these incredibly talented and compassionate individuals, Hormones Matter would not exist.

Before we begin the new year in earnest, let us take a moment to thank all of the writers of Hormones Matter.

Thank You Hormones Matter Writers!

Below are the articles and authors who made the top 100 list for 2015. If you haven’t read these articles, it’s time to do so. If you like them, share them and share our site so we can continue to grow. If you were helped by any of our articles, take a moment and send the writer a thank you note.

This year, we thought we’d do something a little different and include the 25 all-time favorite articles on Hormones Matter. Be sure to scroll down to the second table and take a look. The numbers are quite impressive.

Since we are run by volunteers and unfunded, feel free contribute a few dollars to cover the costs of maintaining operations. Crowdfund Hormones Matter. Every dollar helps.

If you’d like to share your health story or join our team of writers: Write for Us.

Hormones Matter Top 100 Articles of 2015

Article Title and Author	Reads
1. Post Hysterectomy Skeletal and Anatomical Changes -WS	50,814
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs	47,910
3. Sexual Function after Hysterectomy – WS	28,898
4. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle	25,326
5. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS	25,048
7. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman	22, 868
8. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care	11,701
9. Endometriosis: A Husband’s Perspective – Jeremy Bridge Cook	11,626
10. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko	11,024
11. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield	10,580
12. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS	8,494
13. Pill Bleeds are not Periods – Lara Briden	8,440
14. Silent Death – Serotonin Syndrome – Angela Stanton	8,408
15. An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook	8,374
16. Wide Awake: A Hysterectomy Story – Robin Karr	7,733
17. How Hair Loss Changed My Life – Suki Eleuterio
18. The High Cost of Endometriosis – Philippa Bridge-Cook	7,170
19. Skin Disorders post Gardasil – Chandler Marrs	6,891
20. Essure Sterilization: The Good, the Bad and the Ugly – Margaret Aranda	6,820
21. Love Hurts – Sex with Endometriosis – Rachel Cohen	6,779
22. Dehydration and Salt Deficiency Migraines – Angela Stanton	6,638
23. Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs	6,445
24. Stop the Metformin Madness – Chandler Marrs	6,400
25. Lupron, Estradiol and the Mitochondria: A Pathway to Adverse Reactions – Chandler Marrs	6,110
26. Endometriosis after Hysterectomy – Rosemary Finnegan	6,093
27. The Reality of Endometriosis in the ER – Rachel Cohen	5,962
28. Mittelschmerz – what should you know – Sergei Avdiushko	5,780
29. Red Raspberry Leaf Tea to Relieve Menstrual Pain – Lisbeth Prifogle	5,586
30. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs	5,437
31. Parasites: A Possible Cause of Endometriosis, PCOS, and Other Chronic, Degenerative Illnesses – Dorothy Harpley-Garcia	5,414
32. Endometriosis and Risk of Suicide – Philippa Bridge-Cook	5,413
33. Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection? – JMR	5, 228
34. Adenomyosis – Philippa Bridge-Cook	5,022
35. Gardasil: The Controversy Continues – Lisbeth Prifogle	4,809
36. Hyperemesis Gravidarum – Severe Morning Sickness: Are Mitochondria Involved? – Chandler Marrs	4,801
37. Oral Contraceptives, Epigenetics, and Autism – Kim Elizabeth Strifert	4,452
38. High Blood Pressure in Women: Could Progesterone be to Blame? – Chandler Marrs	4,446
39. My Battle with Endometriosis: Hysterectomy at 23 – Samantha Bowick	4,288
40. Thiamine Deficiency Testing: Understanding the Labs – Derrick Lonsdale	4,045
41. My Battle with Endometriosis and Migraines – Angela Kawakami	3,839
42. Tampons with Glyphosate: Underpinnings of Modern Period Problems? – Chandler Marrs	3,835
43. Cipro, Levaquin and Avelox are Chemo Drugs – Lisa Bloomquist	3,792
44. Hysterectomy or Not – Angela’s Endometriosis Update – Angela Kawakami	3,750
45. Warning to Floxies: Beware of New Med for Psoriatic Arthritis – Debra Anderson	3,691
46. DES – The Drug to Prevent Miscarriage Ruins Lives of Millions – DES Daughter	3,655
47. Sphincter of Oddi Dysfunction (SOD) – Brooke Keefer	3,540
48. Progesterone for Peripheral Neuropathy – Chandler Marrs	3,278
49. The Fluoroquinolone Time Bomb – Answers in the Mitochondria – Lisa Bloomquist	3,251
50. Why is PCOS so Common? – Lara Briden	3,211
51. Pregnancy Toes – What Sugar does to Feet – Angela Stanton	2,971
52. Five Half-truths of Hormonal Contraceptives – The Pill, Patch and Ring – Joe Malone	2,834
53. Five Years After Gardasil – Ashley Adair	2,831
54. Bleeding Disorders Overlooked in Women with Heavy Periods – Philippa Bridge Cook	2,826
55. Is Gardasil Mandated in Your State? – Lisbeth Prifogle	2,814
56. Is Prenatal Dexamethasone Safe: The Baby Makers’ Hubris – Chandler Marrs	2,808
57. Porn Brain – A Leading Cause of Erectile Dysfunction – Chandler Marrs	2,792
58. Lupron and Endometriosis – Jordan Davidson	2,752
59. Endometriosis, Adhesions and Physical Therapy – Philippa Bridge-Cook	2,746
60. Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About – Debra Anderson	2,703
61. Are You Vitamin B12 Deficient? – Chandler Marrs	2,635
62. Topamax: The Drug with 9 Lives – Angela Stanton	2,635
63. Cyclic Vomiting Syndrome – Philippa Bridge-Cook	2,622
64. The Endo Diet: Part 1 – Kelsey Chin	2,614
65. Endometriosis and Adhesions – Angela Kawakami	2,544
66. Thyroid Disease Plus Migraines – Nancy Bonk	2,530
67. Is it Endometriosis? – Rosalie Miletich	2,414
68. Hysterectomy, Hormones, and Suicide – Robin Karr	2,412
69. Why I am Backing the Sweetening the Pill Documentary – Laura Wershler	2,321
70. I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen	2,271
71. How Can Something As Simple As Thiamine Cause So Many Problems? – Derrick Lonsdale	2,456
72. Thyroid Dysfunction with Medication or Vaccine Induced Demyelinating Diseases – Chandler Marrs	2,034
73. Angela’s Endometriosis Post Operative Update – Angela Kawakami	2,017
74. Fluoroquinolone Antibiotics Damage Mitochondria – FDA Does Little – Lisa Bloomquist	1,993
75. Endometriosis and Pregnancy at a Glance – Center for Endometriosis Care	1,969
76. Don’t Take Cipro, Levaquin or Avelox If…. – Lisa Bloomquist	1,960
77. Gardasil Injured – Dollie Duckworth	1,898
78. Fear of Childbirth Prolongs Labor – Elena Perez	1,888
79. Fluoroquinolone Poisoning: A Tale from the Twilight Zone – Kristen Weber	1,883
80. Personal Story: Thyroid Cancer – Myrna Wooders	1,880
81. Recurrent Miscarriage – Philippa Bridge-Cook	1,873
82. Recovering from the Gardasil Vaccine: A Long and Complicated Process – Charlotte Nielsen	1,842
83. Pelvic Therapy for Endometriosis, Adhesions and Sexual Pain – Belinda Wurn	1,818
84. Hormones, Hysterectomy and the Hippocampus – Chandler Marrs	1,777
85. Why Fatigue Matters in Thyroid Disease – Chandler Marrs	1,718
86. How Do You Deal with the Lasting Effects of Endometriosis? – Samantha Bowick	1,697
87. Depression with Endometriosis – Samantha Bowick	1,678
88. Easing Endometriosis Pain and Inflammation with Nutrition – Erin Luyendyk	1,648
89. Anti-NMDAR Encephalitis and Ovarian Teratomas – Chandler Marrs	1,634
90. Autoinflammatory Syndromes Induced by Adjuvants: A Case for PFAPA – Sarah Flynn	1,595
91. Endometriosis Awareness Month: A Wish Noted – Philippa Bridge-Cook	1,513
92. The Role of Androgens in Postmenopausal Women – Sergei Avdiushko	1,477
93. It Wasn’t by Choice: Dysautonomia – Margaret Aranda	1,454
94. Fluoroquinolone Antibiotics Associated with Nervous System Damage – Lisa Bloomquist	1,453
95. Vitamin D3 and Thyroid Health – Susan Rex Ryan	1,439
96. Dealing with Doctors When You Have Undiagnosed Endometriosis -Angela Kawakami	1,439
97. Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health – Luke Fox	1,436
98. Cyclic Vomiting Syndrome and Mitochondrial Dysfunction: Research and Treatments – Philippa Bridge-Cook	1,430
99. Living with Ehlers Danlos is Hell – Debra Anderson	1,420
100. What is Fluoroquinolone Toxicity? – Lisa Bloomquist	1,415

Hormones Matter All-Time Top 25 Articles

Article Title and Author	Reads
1. Post Hysterectomy Skeletal and Anatomical Changes -WS	105,336
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs	99,098
3. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS	70,999
4. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman	40,299
5. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle	39,821
7. Sexual Function after Hysterectomy – WS	35,188
8. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko	31,193
9. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care	24,691
10. Endometriosis: A Husband’s Perspective – Jeremy Bridge-Cook	23,251
11. Skin Disorders post Gardasil – Chandler Marrs	18,105
12. Gardasil: The Controversy Continues – Lisbeth Prifogle	14,174
13. Wide Awake: A Hysterectomy Story – Robin Karr	14,134
14. Endometriosis and Risk of Suicide – Philippa Bridge-Cook	13,836
15. Love Hurts – Sex with Endometriosis – Rachel Cohen	13,782
16. Endometriosis after Hysterectomy – Rosemary Finnegan	13,294
17. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS	13,056
18. Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs	12,901
19. How Hair Loss Changed My Life – Suki Eleuterio	12,835
20. Mittelschmerz – what should you know – Sergei Avdiushko	11,919
21. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield	11,521
22. An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook	10,821
23. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs	10,591
24. Adenomyosis – Philippa Bridge-Cook	10,249
25. I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen	9,826

Adhesions: Cause, Consequence and Collateral Damage

by David M. Wiseman, PhD, MRPharmS

Published on April 27, 2015

14820 views

Dear Dr. Wiseman,

I have been living with adhesions for over twenty years since the age of 21. After five years of period pains I was diagnosed with endometriosis and had five laparoscopic surgeries to remove it. I had relief for some while and then the pain came back. I also had adhesions, which they tried to remove, but they just came back. I don’t know what is worse – the endo or the adhesions.

At 30 I had a hysterectomy which they said would cure my endometriosis and pelvic pain. The pain only got worse and I started to have bouts of painful constipation and diarrhea which I was told was IBS. My belly was and is often bloated with a painful “pulling” sensation and severe gas.

Eight years ago my first bowel obstruction was caused by my intestine wrapping around my ovary. They tried to clean this up with surgery but I had five more obstructions and adhesions surgeries.

For about five years I have had lower back pain. Burning pain started 6 months ago when my bladder is full and when I pee, is about 14 times a day and 5 times at night. Being intimate with my husband is out of the question. My pain daily is an 8-10 and I have no quality of life. Of course the ER thinks you are a drug seeker when you come in continually for pain, but I go when I can’t tolerate anymore. I have tried hypnosis, massage therapy and acupuncture. I lost my job because I was either always taking days off because I was so tired from not sleeping, or in the bathroom. My health insurance has run out. I am taking Vicodin and Ambien.

I need to find someone who will listen to me. PLEASE, Jane

Patient Suffering

Although Jane’s email is a composite, it typifies the many we receive from patients who are at the end of their rope, having experienced some or all of these conditions: painful periods, endometriosis, generalized pelvic pain with adhesions, hysterectomy, IBS, painful bowel movements, bowel obstruction, bladder pain, lower back (sacroiliac joint) pain, painful intercourse, possibly vulvodynia and interstitial cystitis.

Many patients have endured years of suffering with confusing diagnoses. They come to us either because they are finally told they have adhesions, or after doing their own research, suspect that adhesions may be the cause of their problems.

What are Adhesions?

Adhesions are made up of scar tissue. Think of a scar as a patch repairing a punctured bike tire. The patch, or scar certainly does the job, but the tire is never the same again. Imagine being so careless with the glue that the tire is now stuck to the bike frame. This is an adhesion, an internal scar that connects organs or tissues that should not normally be connected.

Most internal organs are covered with a “non-stick” coating, but when this is damaged, organs close to one another will stick and knit together by means of reparative scar tissue.

MRI, CT or ultrasound detect adhesions only in limited circumstances.

The only way to see adhesions is by direct surgical observation. There is no blood test for adhesions.

What Causes Adhesions?

Almost any kind of trauma can induce adhesions, the most common of which is surgery. Organs can be damaged by being handled by a surgeon or surgical instruments, or by drying out in the air of an operating room or the gases used in laparoscopy. Non-surgical injuries including knife or gunshot wounds can also lead to adhesions. Endometriosis, infection (e.g. from a burst appendix), high doses of radiation, peritoneal chemotherapy or surgical sponges left behind can also cause the kind of damage leading to adhesions. Too many, too large and too tightly placed sutures cause adhesions as do many meshes used for hernia repair or organ prolapse (e.g. transvaginal or pelvic meshes).

What Problems do Adhesions Cause?

Imagine one end of your garden hose sticking to the other and you can easily see why adhesions around the intestine can cause it to twist or kink and obstruct. Infertility will result when the same thing happens to the fallopian tubes, the channels through which eggs travel from the ovary to the uterus. Sometimes they can cover the end of the fallopian tubes and prevent eggs from entering in the first place.

Adhesions make operating more dangerous and lengthy, increasing the chances of bleeding and damage to tissues. Adhesions from a prior cesarean section, will cost the newborn baby precious seconds in an emergency c-section.

Adhesions and Adhesions Related Disorder (ARD) and CAPPS

Adhesions patients with severe, long-standing disease develop what we call Adhesions Related Disorder (ARD): chronic abdominal or pelvic pain, recurrent bowel obstruction and sometimes malnutrition. With many doctors unable to provide a diagnosis, or unwilling to tackle adhesions, psychosocial issues abound from unemployment, poor insurance coverage, lack of disability benefits and alienation by friends and family who only see a malingering, drug seeker. ARD patients with bladder, pelvic, bowel, genital or sacroiliac joint pain become practically indistinguishable from those with similar constellations of symptoms arising from initial diagnoses of IC, IBS, endometriosis, etc. We call this CAPPS: Complex Abdomino-Pelvic and Pain Syndrome.

How Common are Adhesions?

Over 90% of patients having any kind of surgery may form adhesions and problems, many occur only decades later. Who develops adhesion-related problems and why is not fully understood.

The over 400,000 annual adhesion-related hospitalizations in the USA rival those for heart, hip and appendix operations with annual direct costs to the health system over $5 billion. Fully 35% of women having open gynecologic surgery will be readmitted 1.9 times in 10 years for secondary operations due to adhesions, or complicated by adhesions (Ellis et al., 1999; Lower et al., 2000). There are similar risks in laparoscopy (Lower et al., 2004) and in men also, but for a variety of reasons the problems appear to impact women more devastatingly from an economic and social perspective.

Over 2000 people die every year from intestinal obstruction due to adhesions.

Do Adhesions Cause Pain?

While patients suffering with adhesions are quite clear about whether they cause pain, within the medical community there is great debate. Much of the debate stems from a flawed study and the recognition that surgical removal (adhesiolysis) of the adhesions doesn’t always work. The lack of effective or complete pain relief after adhesion removal has led some to suggest that adhesions do not cause pain. For a full discussion about the problems with adhesion research click here. Additional considerations confusing the relationship between pain and adhesions include:

Adhesions can form again after surgery, so pain may return.
Adhesion removal may not correct scarring below the surface of affected organs or tissues. Scarring can entrap and tether nerves, preventing them sliding around in tissue as they need to during normal movement. When nerves are stretched because they are tethered, pain often results.
Not all adhesions cause pain. Patients may have pain, and they may also have adhesions. One may not be the cause of the other, but may be the product of the same cause.
Adhesions pain, may be “referred” – sometimes the pain is felt in other locations and not where the adhesions are.
Chronic pain is different from acute pain. The mechanisms of chronic pain are not well understood but once pain has persisted, the system goes on auto-pilot and the biochemical and nerve changes induced by long-term pain become very difficult to undo with surgery. Furthermore, because of the interconnections between the nerves in the pelvic area, where many adhesions develop, pain or disturbances in function in one organ may “spread” to other organs.
Bowel pain, a common symptom of adhesions patients is difficult to diagnose. In some cases, it is related to constipation from chronic opioid use. In other cases, it can be related to an adhesion caused bowel obstruction. (Bowel obstruction caused by adhesions or anything else, is an emergency often treated with surgery. If you have a history of obstruction you should identify a general surgeon to work with and plan as much as possible for these sorts of events).
Long term use of opioids increases the sensitivity to pain which makes slight pain feel more painful and requires more medication to alleviate. It’s a vicious cycle that is very difficult to break.

What to do about Adhesions?

Prevention is the best treatment. If the only reason for surgery is pain, whether it is adhesiolysis (cutting of adhesions), hysterectomy or placement of an electrical neurostimulator (e.g. INTERSTIM®), be sure to exhaust all non-invasive options first and be aware that there are problems with each option.

Adhesiolysis (surgery) has helped some patients but there is the risk of no effect or recurrence.
Hysterectomy, in addition to incurring some long term health risks is likely to exacerbate the problems. Although it has helped some patients with pelvic pain, evidence concerning its efficacy, is minimal (Andrews et al. 2012). See here, here and here to learn more about the long-term consequences of hysterectomy.
Neurostimulators carry their own number of risks and may preclude you from using non-invasive treatments like therapeutic ultrasound.

There are no easy answers and there is no magic wand. We advocate a multidisciplinary approach. Start with a gynecologist, urologist or urogynecologist that specializes in pelvic pain and who works closely with a general surgeon and a physical therapist specializing in pelvic pain/pelvic floor dysfunction and visceral manipulation (e.g. the Barral method). The team should also include a pain management doctor, psychologist, gastroenterologist, and a dietician/nutritionist. Pain or other difficulty with intimacy is common – do not be ashamed of talking about this, preferably with someone who specializes in sexual medicine.

Many patients have been able to achieve some relief and avoid surgery with pelvic floor physical therapy and/or visceral manipulation, careful control of diet, well placed and timed nerve blocks (e.g. pudendal nerve) and judicious use of opioids. We have found that a wearable therapeutic ultrasound device has brought relief to patients suffering with adhesions and other painful pelvic, bladder and genital symptoms (Wiseman and Petree, 2012).

If Surgery is the Only Option

If you must resort to surgery, insist that the surgeon uses powderless gloves and humidifies and warms the laparoscopy gases using a device called INSUFLOW®. Insist that an adhesion barrier be used where possible. Think of an adhesion barrier is a degradable type of “internal Band-Aid” that is placed over organs at risk of forming adhesions. Once the tissue has healed, the barrier dissolves because it is no longer needed. Adhesion barriers are not 100% effective and cannot be used in all situations. There are three approved in the USA – INTERCEED® Absorbable Adhesion Barrier, Seprafilm® Adhesion Barrier, and ADEPT® Adhesion Reduction Solution, the last of which appears to have limited utility. Other materials are used “off-label” which you can read about here.

Whether your adhesions are the cause of the pain, the consequence of pain or just happen to be there, you are still in pain and you are suffering. Educate yourself and those close to you about adhesions. The International Adhesions Society and the International Society for Complex Abdomino-Pelvic & Pain Society (ISCAPPS) provide the most up-to-date information on these conditions. We’ve also found these books to be useful:

Stay active as much as possible. Walk, garden, and exercise lightly. Stop smoking. Watch old funny movies. As difficult as it may be, it is important that you maintain a circle of family and friends, through a religious community or other group.

Above all, remember you are not alone and this is not in your head.

The information provided here is not intended nor is implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.

References

Andrews J et al: Noncyclic Chronic Pelvic Pain Therapies for Women: Comparative Effectiveness. AHRQ Comparative Effectiveness Reviews 41. 2012 Jan; 11(12):EHC088-EF. http://www.ncbi.nlm.nih.gov/pubmed/22439157

Ellis H et al. Adhesion-related hospital readmissions after abdominal and pelvic surgery: a retrospective cohort study Lancet 1999; 353:1476. http://www.ncbi.nlm.nih.gov/pubmed/10232313

Lower AM et al. The impact of adhesions on hospital readmissions over ten years after 8849 open gynaecological operations: an assessment from the Surgical and Clinical Adhesions Research Study. Br J Ob Gyn. 2000; 107:855. http://www.ncbi.nlm.nih.gov/pubmed/10901556

Lower AM et al. Adhesion-related readmissions following gynaecological laparoscopy or laparotomy in Scotland: an epidemiological study of 24 046 patients. Hum Reprod. 2004; 19:1877 http://www.ncbi.nlm.nih.gov/pubmed/15178659

Wiseman, D. M. Disorders of adhesions or adhesion-related disorder: monolithic entities or part of something bigger–CAPPS? Semin Reprod Med. 2008; 26:356. http://adhesions.org/Wiseman2008SeminreprodMed26p356CAPPS.pdf

Wiseman, DM and Petree, T. Reduction of chronic abdominal and pelvic pain, urological and GI symptoms using a wearable device delivering low frequency ultrasound. International Pelvic Pain Society; Chicago, IL. 2012. http://www.kevmed.com/resources/Wiseman2012-IPPSMeetingChicagoPainShieldCPP-Thumb.png

This post was published previously July 2013.

Pelvic Therapy for Endometriosis, Adhesions and Sexual Pain

by Belinda Wurn, PT

Published on March 24, 2015

7667 views

While doctors disagree on the exact cause of endometriosis, theories include heredity, environmental problems, or retrograde flow of endometrial tissue from the uterus, out the fallopian tubes, and into the body. Whatever the cause, most doctors agree that endometrial implants and adhesions (internal scars) are frequently found together. Adhesions are tiny but powerful structures that act like straight jackets wherever they form, causing pain or infertility – or both; because adhesions do not appear on any diagnostic test (x-ray, MRI, CT scan), they can elude even the most savvy physician. Thus, our patients often tell us “my doctor says he can’t find anything” or even “he says it’s all in my head.” The truth is, the pain is exactly where you are feeling it.

Endometriosis adhesions — Endometriosis (left) and adhesions (right) can cause pain and infertility.

Endometriosis Pain

While there is no consensus as to the cause of endometrial pain, increasing evidence from the studies published from our clinic and elsewhere indicates that the pain is caused, or significantly increased by adhesions – internal scars that form where endometrial tissues attach to underlying structures. In the past, the only method to treat endometrial adhesions was surgery. However, physicians and their patients are stymied by the fact that, no matter how skilled the surgeon, surgery to decrease endometriosis or adhesions tends to cause more adhesions to form as the body heals from surgery. A large retrospective study of post-surgical outcomes [Digestive Surgery, 2001] reported that between 50% and 100% of all pelvic and abdominal surgeries created additional adhesions.

Thus, while the surgery may help some women, the relief may be temporary; recurring, and sometimes greater pain can appear as the body forms internal scars to heal from the surgery. Some evidence indicates that endometrial implants tend to recur with greater frequency at the surgical site.

Endometriosis and Pelvic Pain

In our own published studies, we have come to understand that the pelvic, abdominal, hip or back pain often associated with endometriosis comes from the pull of tiny but powerful cross-links, the building blocks of adhesions. Where endometrial implants appear, adhesions tend to bind the foreign tissue to the underlying structure. As the tissues swell with each menstrual cycle, the adhesions pull on the delicate underlying structures, causing pain. Our manual physical therapy appears to detach the adhesive bonds so endometrial tissues can expand and contract naturally, without pain from the adhesive bonds.

Hormone medications such as birth control pills can stop the menstrual cycle totally. Since the endometrial tissue does not swell, it does not pull on the adhesions and pain is relieved. However, if the woman wants to have a child, she has to stop the birth control pills and the pain returns. Thus, the medications address the symptoms, but not the cause of the pain.

Pain with Sexual Intercourse: Definitions and Therapies

Our patients tend to report three different types of intercourse pain:

Pain with initial penetration
Vaginal pain during intercourse
Pain with deep penetration

The body creates adhesions (tiny internal scars) wherever we heal – whether due to an infection (e.g., bladder, bacterial, yeast, STD), a trauma (abuse, fall onto the tailbone or perineum), or a surgery (abortion, C-section, laparoscopy) – or due to inflammation from the endometriosis itself. These adhesions can be small enough that they form between muscle cells, causing pain when your partner pushes on them.

Because of its unique position in the body, a woman’s vagina is subject to numerous traumas in life. Falls onto your bottom cause adhesions to form. Once your body heals, the adhesions remain there for life, causing tiny but powerful straight-jackets that can cause pain when pressure is exerted on them – such as during intercourse.

With the warm, moist environment, the vagina tends to be a perfect place for bacterial infections. Again, adhesions form as the first step in the healing process – to help contain the infected area so your body can heal more easily. Once you have taken antibiotics or are otherwise healed, the adhesions that formed remain in the body for life – unless removed by a skilled physical therapist who specializes in work in this delicate area.

Women who have pain with deep penetration say “it feels like my partner is hitting something,” – and he is! The usual cause for this deep pain is either a stenosed (adhered) cervix caused by adhesions following a healing event (shown in the drawing below), or a forward tailbone – caused by a fall, trauma, abuse or surgical scars.

Physicians are generally stymied to cure intercourse pain. Their prescriptions generally consist of any of a combination of therapies that address the symptoms, but not the cause. Physicians may suggest:

Abstinence
Pain relievers
De-sensitizing drugs

These approaches do not help a woman get the pleasure or function (desire, lubrication, orgasm, pain relief) that should be hers. Many of our patients feel their lives deeply impacted; some are concerned that the pain will impact or even end their relationship with their partners.

Fortunately, there is now a non-surgical, drug-free treatment for endometriosis pain. The Clear Passage Approach^® has been examined for treating pelvic, menstrual and intercourse pain associated with endometriosis for decades. In a recent study update in the Journal of Endometriosis, this therapy was found as effective as surgery – even a year after therapy.

Besides studies in that journal, studies on this work are published in WebMD’s Medscape General Medicine, and housed in the U.S. National Library of Medicine (see study results below). In all of our studies, the treatment is a manual physical therapy that can feel like a deep massage. A brief look at the results are provided below. Learn more about treatme nt for endometriosis pain.

Pain Decrease and Function Improvements from a study on the Clear Passage Approach, Published in WebMD’s Medscape General Medicine, 2011.

We are glad to provide 30-minute phone consultations to interested women, at no charge. Simply visit the website www.clearpassage.com.

Join us for our next posting on endometriosis and Infertility.

Useful Website Links

Endometriosis pain: http://www.clearpassage.com/what-we-treat/chronic-pain/endometriosis-pain/

Endometriosis infertility: http://www.clearpassage.com/what-we-treat/infertility/endometriosis-infertility/

Intercourse pain: http://www.clearpassage.com/what-we-treat/sexual-dysfunction/intercourse-pain/

Published studies: http://www.clearpassage.com/resources/published-studies/

Published success rates: http://www.clearpassage.com/resources/success-rates/

Pain After Endometriosis Excision Surgery

by Philippa Bridge-Cook, PhD

Published on June 11, 2014

15862 views

When an endometriosis patient takes the step of having laparoscopic excision surgery to treat their endometriosis, they have often already been through a long journey with many failed treatments. This journey often includes treatments such as multiple rounds of different types of birth control pills, stronger hormonal medications designed to suppress menstrual cycles (such as Lupron or other GnRH agonsists), multiple cauterization or ablation laparoscopic surgeries, and various different complementary alternative medicine approaches.

Most patients who undertake excision surgery after trying many or most of the above, do so on the basis of their own research, since many gynecologists are misinformed about endometriosis treatment, and are not trained to do excision surgery. A recent worldwide consensus paper on the management of endometriosis states that “there is unanimous consensus over the recommendation to excise lesions where possible, especially deep endometriotic lesions, which is felt by most surgeons to give a more thorough removal of disease.” Sadly, there are fewer than 100 surgeons in North America currently practicing expert excision of endometriosis.

Patients come to excision surgery with hope that this treatment will finally bring them relief. And when pain persists or recurs after excision surgery, patients may feel disappointed, hopeless, and confused. However, there are many causes of pelvic pain that are not endometriosis, which can continue to cause pain even after expert excision surgery, and once these other causes are treated, excellent pain relief and relief of other symptoms may be achieved. Although it may be natural after previous surgeries have failed, to assume that endometriosis is still the cause of the pain, if surgery was performed by an expert, it is prudent to rule out other potential causes of pain before assuming that endometriosis continues to be the culprit.

Adhesions After Surgery

Adhesions are a very common occurrence after laparoscopic excision surgery. Adhesions occur in 70 to 90 percent of patients undergoing gynecological surgery. In some cases, adhesions may be present but not cause pain, but adhesions can also cause chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and more. Adhesions are the primary cause of bowel obstructions and are a common cause of hospital admission for people with a history of abdominal or pelvic surgeries.

Pelvic Floor Dysfunction

Pelvic floor dysfunction is also a common consequence both of endometriosis itself, and of the surgeries used to treat it. The pelvic floor is a group of muscles and other tissues that form a sling from the front to the back of the pelvis. When the muscles are too tight, too relaxed, or a combination of both, it can result in problems with urination or bowel movements, pain with sex, pelvic pain, genital pain, back pain, and/or rectal pain.

Adenomyosis

Adenomyosis is a disease of the uterus, where the inner lining of the uterus (the endometrium) is found within the muscle wall of the uterus. There is no clear association between adenomyosis and endometriosis, but it is possible to have both conditions. Adenomyosis may be underdiagnosed because it is difficult to see using imaging techniques such as ultrasound, and the symptoms overlap with many of other conditions causing pelvic pain.

Interstitial Cystitis

Interstitial cystitis is a disease of the bladder that can cause pelvic pain, bladder pain, urethral and/or vaginal pain, painful sex, urinary frequency and urgency. Some doctors have found a very high association between endometriosis and interstitial cystitis, where many patients have both conditions. This has led to the two diseases being nicknamed “the evil twins.”

Vulvodynia and Pudendal Neuralgia

Endometriosis patients may also be more susceptible to pain syndromes involving nerves in the pelvic area, such as vulvodynia, a condition associated with pain in the opening of the vagina, and pudendal neuralgia, a condition involving pain, burning, and/or numbness in the genital area and rectum. The potential cause and effect relationship between endometriosis and these other conditions is not clear; however, some doctors theorize that chronic inflammation, immune system dysfunction, and neural pathway sensitization may play a role in the development of multiple pelvic pain syndromes.

Not All Pelvic Pain is Endometriosis

Unfortunately, although endometriosis is a painful and often debilitating condition all on its own, in many patients other conditions also contribute to pain and other symptoms. For doctors and patients alike, it can be tempting, once a diagnosis of endometriosis is made, to blame every symptom arising in the pelvic area on endometriosis. However, pain after careful excision surgery can often be caused by one or more of these other pelvic pain conditions, and a correct diagnosis of the underlying cause of the pain is crucial to successful treatment.

Endometriosis and Adhesions: A Story of Hope

by Philippa Bridge-Cook, PhD

Published on December 16, 2013

3750 views

Sometimes the holiday season causes us to feel more reflective than usual. As I was on my way home from my work holiday party, I was struck by the difference between this year’s holiday party and last year’s. Last year I spent the party surreptitiously downing painkillers and trying to look happy. I was barely recovered from the two surgeries I’d had for endometriosis a few months prior, and the complications that ensued, and I was already starting to suffer from the problems that I would eventually realize were caused by adhesions as a result of the surgeries.

This year I spent the evening enjoying the party, socializing, eating and dancing, without any pain at all. It was actually the first time I’d been able to enjoy a holiday party in several years, because somehow every year my endometriosis always seemed to spoil the fun. It still feels a bit unusual to me to be without pain—it’s like being shoved from the middle of a noisy crowd into a soundproofed room—the absence of sound/pain becomes extremely noticeable. Although I’m not completely free of pain every day, or even most days, it’s remarkable to me that it can happen at all, after many years of daily pain to some degree.

They say it takes a village to raise a child, and I think the same is true for a patient with chronic disease: it takes a team of people, health professionals and support people, to help make the patient’s disease manageable. I have been helped by so many amazing people along my journey, and I am quite sure that I would not be at the point I am at today, if not for the help of all of them together.

For me, one of the first steps in getting better was laparoscopic excision surgery, to treat my endometriosis. In addition to being an extremely skilled surgeon, the doctor who did my excision surgery was truly an unusually dedicated and compassionate doctor. When I experienced surgical complications due to an undiagnosed bleeding disorder, he was at the hospital morning and night, and calling me to check in several times per day. After a fainting incident late one night, he was at the hospital 20 minutes later, at 11 pm. When a technician couldn’t take my blood within the time frame he wanted one weekend day, he came to the hospital to do it himself. He always had a reassuring smile and a hand on my shoulder, saying, “hang in there, you’ll get through this.” I’m not sure what would have happened if I’d been in the hands of someone less experienced and committed.

Although the excision surgery had provided me with a lot of relief from endometriosis pain, adhesions caused by that surgery, and a subsequent surgery to remove a hematoma caused by my bleeding disorder, began to cause as many problems, if not more, than I’d had before the surgeries. I had severe pain in my left lower pelvic area, severe pain and nausea after eating, left chest and rib pain, and eventually severe bladder pain. Simple, basic activities like walking and eating were too painful, and I was in the ER multiple times because of pain and gastrointestinal problems.

The problems with adhesions led me to seek treatment with a physical therapist who also ended up exceeding my expectations for her level of skill, commitment and caring. After being told by my doctors that the only treatment they could offer for my adhesions was more surgery, which might actually make the problems worse, I traveled to Miami for a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage physical therapy). This treatment was very successful and reduced all my pain tremendously, restored my ability to eat, and reduced my constant nausea to merely occasional. I was very lucky that my physical therapist was extremely compassionate and sensitive, and through many hours of conversation during treatment she helped me make sense of the emotional consequences of so many years of pain. She also provided an invaluable self-treatment program that I continue to do at home to help maintain the benefits of treatment, and continues to be an ongoing long-distance resource when I have questions or problems.

Finally, the support of family and friends, coworkers, and online and in-person support groups is also invaluable to me as I continue to navigate through the journey of chronic illness. Everyone with chronic illness has felt those moments where they feel isolated and lose hope that things will get better. In those moments a shoulder to cry on, or a message that we are strong and can move forward despite obstacles, or even an offer to keep the faith for us when we can’t, are what keep us afloat.

My reflection on holiday parties past and present helped me realize how fortunate I have been to have a team of skilled and compassionate healthcare professionals, and caring support people, to help me through this difficult journey. To anyone reading this who also suffers from a chronic disease, I wish you the best in assembling your own team, and many happy holiday parties for the future.

The Road to Baby: Fertility and Endometriosis Treatment

by Kelsey Chin

Published on August 6, 2013

4174 views

Waning Fertility

I have always wanted to be a mother. Growing up around my grandmother’s day care, I relished taking on nurturing roles from a young age. I have always enjoyed spending time with children, reading to my younger cousins, and making up games for us play. I even earned my degree as an Early Childhood Educator, and have dreams of someday writing children’s books. My decision to work as a nanny while I finish my graduate degree has changed my outlook on my career goals, and I now hope to open my own preschool in the future. Caring for children has always come naturally to me, and has become my passion. At the age of 28, I am now four years past my peak fertility, according to several reproductive endocrinologists I have seen. Even though I am young, in the area of reproductive medicine, I have already lost the most fertile years of my life. This comes as no surprise to me. Knowing I have endometriosis, I expected that I would have trouble getting pregnant. I never expected how intense my road toward baby would be.

Endometriosis and Fertility

My husband and I were already together when I was first given my tentative diagnosis of endometriosis at the age of 22. In the same breath, my doctor assured me that she would get me pregnant, “even if we have to do in-vitro fertilization (IVF)!” I nearly fainted. Right then and there. I had barely graduated from college, and was still years away from starting a family! My fertility loomed over my relationship with my husband for nearly 5 years before it became a tangible part of our life together. My first laparoscopic surgeon informed us at my post-operative appointment that after trying birth control pills, progesterone, Lupron, and surgery to manage my then-stage III endometriosis, I was out of options and needed to get pregnant immediately.

My husband and I were given the choice to start trying for a baby, or go back on suppressive therapy, meant to eliminate estrogen and stall the growth of the disease. Pregnancy and breast feeding can offer a period of relief from endometriosis pain, since the body does not menstruate. For me, suppressive therapy options were Lupron or Mirena, both invasive and potentially dangerous treatments. I did not want to go back on easier methods, including progesterone pills, which my body could not tolerate. I had already tried progesterone for four years, and had suffered medical and emotional side effects. There was no easy choice.

I had wanted to start a family for years, but my husband and I were not in a place financially or otherwise to get pregnant, so we chose to go with Lupron while we got our ducks in a row, and told our families. Unlike my first experience with Lupron injections, this time, the Lupron did not help; I was still in excruciating pain during my period, and I even lost some hair and bone density. With our options at an end three months later, we started trying to conceive.

Although I was excited about becoming a mother, the following months were some of the most stressful of my life. With the looming return of my disease while being “untreated,” the immediacy of our need to conceive was overwhelming. When most couples decide to start a family, there might be a period of excitement, some adjustment, and taking the process slowly, while hoping that a positive pregnancy test (or Big Fat Positive to us online groupies) might happen easily. I jumped straight into charting my basal body temperature, cervical mucus, and peeing on sticks to see if my luteinizing hormone had triggered ovulation. I bought a stack of pregnancy books, and a few hard-to-come-by infertility books. So much for romance! I soon began using an app on my smart phone to track all the data for me, which sent me into an obsession with checking my chart every hour (for no reason whatsoever), in the hopes that today might be the day my precious egg would pop. But it never did.

Trying to Conceive: The Complications

Two months into my trying to conceive (TTC) journey, my obgyn suggested a reproductive endocrinologist. Most women get 6 months to a year before seeing a fertility specialist, but my doctor wanted me on the fast track. We were using a pregnancy as a treatment, a chunk of time without period pain, so we had no time to delay. One late evening visit later to a specialist at Brigham & Women’s, I was diagnosed with an anovulatory cycle (no ovulation), and given 5 days worth of the fertility drug Clomid to begin taking once my next period arrived. Five days after my 28^th birthday, I started my first fertility treatment.

Unfortunately for me, the RE who prescribed these drugs did not monitor my hormone levels or the size of my follicles. I was told how to time intercourse, and to call the office when I got a positive pregnancy test or started my period. I ended up developing right side abdominal pain, something I was fairly accustomed to, and which the resident in my RE’s office found to be a nearly 5cm complex cyst. To my dismay, the RE could not fit me into her schedule for over a month. I was left to wait and see what happened. When my next period arrived (no BFP for me), so did the most intense pain and bleeding I had ever experienced. After nearly fainting from the blood loss, and doubling over in pain, a trip to the ER confirmed that the cyst had ruptured. The nurse at my RE’s office suggested taking a month off of fertility drugs to heal, then starting up again, but could not fit me in for an appointment for several more weeks.

I was shocked by how unimportant I seemed to this doctor. Why didn’t she feel like a ruptured endometrioma might warrant squeezing me into her schedule? Wasn’t my advanced disease serious enough? I guess she figured that was my obgyn’s job, but she had prescribed the fertility drugs that sent my hormone levels soaring, likely causing a flare in my endometriosis. Did she not feel she was somewhat responsible for my care? I felt abandoned. I never went back to that RE.

I decided to take that month, and do some research of my own. My obgyn suggested IVF when I saw her to follow up about the cyst. It was all happening too fast! I had always wanted to avoid IVF, which I found too invasive and highly taxing. Not to mention I was in my last semester of graduate school, and doing an internship. At this point, my husband and I had only been trying for four months. Most couples get three times that amount of time before considering daily injections, multiple embryos, and possibly life-threatening complications. Tears rolled down my face as I read books about other women’s experiences with IVF, and spoke to others like me on fertility forums about the process. I was not ready for this.

Excision Surgery

I began researching endometriosis and excision surgery, a technique few gynecological surgeons can perform adequately. It involves cutting the endometriosis out like a cancer to ensure that all of the disease is completely removed. After immersing myself in endometriosis literature and surgical sites, I considered several excision specialists from all over the US. Eventually, I found a plan that would work for me, and a doctor I felt I could trust.

I flew to St. Louis in June to have an excision surgery, despite obvious contention from my obgyn and the IVF specialist she recommended in her practice. They could not understand why I would fly halfway across the country when there were plenty of doctors here. My obgyn’s argument was that my first surgery had complications, and my recovery period was long. However, my gut told me that I had made the right choice. In the end, my surgeon found that my disease had progressed rapidly in the 11 months since my first surgery, far beyond anyone’s expectations. Besides the involvement of my bladder, bowel, ureters, rectum, appendix, and pelvic lining, the disease had ravaged my reproductive organs. Both of my ovaries had endometriomas, were being pulled behind my uterus, and attached to the back of my pelvis. My left fallopian tube was kinked shut. Adhesions, sticky bands of scar tissue, had distorted my anatomy to the point where nearly all of my pelvic organs were stuck together. My surgeon worked for six hours, even reconstructing my ovaries to avoid leaving raw tissue exposed and vulnerable to more damage. At my post-operative appointment, we discussed my options for fertility, and made a plan.

Road to Baby – Back on Track

Now, 10 months after starting on the Road to Baby, we are trying on our own naturally, without the help of fertility drugs. My first and only experience with pumping my body full of hormones was enough to turn me off of it completely! For me, the experience caused real damage to my body, and I am not eager to do it again. It feels like we are starting over, with a fresh canvas. We found a local fertility specialist who comes recommended by endometriosis patients like me who believe excision is the answer to this disease. He seems on board with our decision to wait a little longer before considering drastic measures. IVF may still be an option for us if we continue to struggle, or if there is any male factor infertility, something none of my previous doctors even bothered to test for. But for now, no one is pressuring us to jump in a race car and speed toward the finish line. We have time to take in the scenery and enjoy the ride together.

And that’s exactly how it should have been all along.

About the Author: Kelsey is an Early Childhood Educator and blogger from the Boston area. She chronicles her journey using sewing as a positive outlet while living with chronic pain and Stage IV Endometriosis. Diagnosed at 22, Kelsey has spent six years learning about her disease, and has recently become active in Endometriosis research and advocacy. She is a published poet who dreams of writing children’s books, and opening her own preschool that supports reading development. To read more about Kelsey’s daily dabblings in sewing, as well as recipes, preschool curriculum ideas, and information about endometriosis, visit her blog at www.silverrosewing.blogspot.com

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References

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Endometriosis Pain

Endometriosis and Pelvic Pain

Pain with Sexual Intercourse: Definitions and Therapies

Useful Website Links

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Vulvodynia and Pudendal Neuralgia

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