Diagnosed with Adenomyosis

I have a friend who has been diagnosed with adenomyosis. She is in terrible pain and has been out of work for several months. She is in her middle 30’s, has not had any children yet but desperately wants to have children sometime in the future.

Knowing that she wants to try and have children, her doctor has been trying to stop the pain by giving her a series of nerve blocks. I believe it is a series of diagnostic and therapeutic nerve blocks. So far the blocks have not been successful and her pain continues. Has anyone heard of this to treat adenomyosis before?

What are her chances of being able to ever have children?

I am not very familiar with this disease and I am just trying to learn more. Any information would be helpful. Thank you.

Dear Anonymous-Chances are the blocks will not work for this disease process. It is a treatable disease and we have had success with FAS. It is difficult to comment on the fertility issue without knowing the extent of the adenomyosis. Please refer to that section of the website.
If you have any more specific questions, please ask.
Dr. DJ

how long does it take the disease to show its symptoms? can you have it for years before you know it? i had a tubial ligation in 1994, a reversial in 1997 and i just had a hysterectomy 2 weeks ago. i have always had painful periods. during the time span from 1986 to 1992 i also had2 d & cs and 2 laprascopic proceedures to remove cysts. also at the birth of each child i had to have cyst removed as well. which were 1986,1990,1994. could this adenomyosis have been the problem all along?

Dear srpbgpjr-
Adenomyosis, which is endometriosis of the uterine muscle can develop over many years. It does produce heavy, painful periods and a very hard uterus. Pathological diagnosis can only be done with a biopsy or in your case tissue studies from the removed uterus.
The cysts are probably not related.

I was just told by my gyn that I “probably” have adenomyosis. The only basis for her diagnosis was that I have been having lower back pain for about a year and heavy bleeding and cramps with my periods (I’ve always had terrible cramps). I will have a ultrasound exam as a follow-up. I had a myomectomy about 6 years ago and at that time my doctor did not mention anything about adenomyosis. My fibroids have started to come back. I am 43 and have never been pregnant. I was married for 5 years and tried to get pregnant then with no luck. Now I am divorced but I do want to have a baby. What options are available assuming I do have adenomyosis. What about in vitro pregnancy or othermodern fertility techniques? Or should I give up hope and accept that I will never be able to have a baby? Also, what causes or induces adenomyosis and what is the relationship between it and endomitriosis?

Hello and thank you in advance! I recently had a laporoscopy in search of endo. My doctor said that he found very little endo, but that my uterus was enlarged, 8-10 but I don’t know what that means. He also said that it is very soft and I have fibroid tumors. He never said how many. He feels that my reason for pain is Adenomyosis. He resected the nerve endings to the uterus, hoping that would end/ease my pain. He said that if, in two months or so, I am still experiencing the severe pain with ovulation/menstruation I could have the uterus removed.

Can you tell me about the size of the uterus? Again he said 8-10. And is it bad if the uterus is soft? I had the procedure on 6/8/99 and have a followup appt. in early July. Is there anything else I should be concerned about or any questions I should ask him? I left a message for him a week ago, but have heard nothing.

Again, I thank you for your help, and for this comprehensive website.

Dear Elika-
Appreciate your inquiry to the website. The 8-10 reference to your uterus means the size of your uterus. The uterus is measured in terms of weeks as if during a pregnancy. You have an approximate 2 1/2 month uterus.
As far as your adenomyosis, it is a good sign that the exam indicated a soft uterus. Adenomyosis is usually associated with a hardened uterus-so possibly your disease process is not too extensive. Only a biopsy of the uterine muscle would indicate this.
There is no reason to have a hysterectomy for fibroid tumors or adenomyosis-both of these can be removed effectively and the uterus reconstructed.

i have a question im from Canada..and recently i have been in and out of the hospitals here and 3 weeks ago i had a laprascope done…to remove a cyst that burst…when they did the scope the doctor found that i had extreme endmetreosis and they drained the fluid only no removeal of they cyst was done…now as of last Friday i started ovulating and again another cyst burst i was admitted and stay overnight for observation…they have me on naorixen 500mg …now since they dont have the alternative choice here in Canada what im wondering if or what the normal outcome is of my situation

thanks for listening april

Thank you for this website. I am in the throes of a yet to be confirmed diagnosis of adnemyosis, as well as having undergone a laparoscopy, 6 months ago. Like others on this message board, I too have been told by my doctor that my uterus is enlarged, yet the fibroids aren’t significantly large. A myomectomy was attempted during the lap procedure. However, I have had little relief from my symptoms.

I am 38 years old, and I have no children. The past year has been very difficult, as I struggle to try and understand the reasons for my discomfort. It is confusing and scary, because I don’t feel that I am improving, yet the only thing that’s been done these past six months is periodic monitoring.

I will carefully browse this website for some information that can give me a more positive outlook. Right now I am simply depressed, because I don’t know what to expect.

Dear April-
The laparoscopic approach to deal with ovarian cysts is an option with some limitations. Depending on the experience of the surgeon most or all of the cysts can be removed. The incomplete removal of the cyst will lead to recurrence and sometimes quickly.
The findings of endometriosis during a laparoscopy in most cases can be handled during that surgical setting.
My technique of using two types of lasers during laparoscopy is not always used. Based on the little information that you have given, an open surgical procedure (FAS) most likely should be done. The advantage of doing this is that the ovary can be more thoroughly treated and reconstructed as with your endometriosis.

Dear Anonymous-
It is our practice in most cases not to respond to anonymous postings. In the future if you would like to continue to participate in this forum, we would appreciate at least a first name.
In response to your questions, the laparoscopic approach to removal of fibroids has tremendous limitations. It is usually confined to removing very superficial and pedunculated tumors (refer to website).
IF in fact you do have associated adenomyosis with fibroid tumors, the only procedure that will help your symptoms is FAS. You do have an option-don’t be depressed.

I’m being treated with an antibiotic and anti-inflammatory. The doctor suggets that the next course of treatment is Megase. What are the side effects of this drug?

Dear Anonymous-
Megase can be associated with weight gain, and the development of blood clots in the lungs and extemities, as well as many other adverse reactions. You should go back and discuss this treatment in more detail with your physician. I am certain he would be happy to answer your concerns in more detail.

I am 38 years old and suffer from Adenomyosis. I have had surgery in the past to remove fibroids. In January 99 I had a D & C to help with heavy bleeding, swelling and pain. My condition improved until this past month when the swelling, cramps, back pain, and pelvic pain returned. They are present almost every day. My gynogologist says a hysterctomy is the only answer. I don’t want to do that if at all possible. Do you know of anyone in British Columbia or Canada that performs FAS? Also, would an endrometrial (sp?) ablation solve the problem? Thanks for any help you can offer.

Dear Lorri-
Endometrial ablation may temporarily help with your symptoms, but it may not cure the problem over time.
Adenomyosis effects the entire muscle of the uterus, not just the endometrial lining. Our FAS procedure deals with the primary problem, the muscle, by using multiple laser techniques for treatment. Please refer to the section of the website regarding Adenomyosis.
This is the only place in the US and Canada where this procedure is currently performed. If we can give you some help, please call my office.

Dear Doctor
I have adenomyosis, why is it that i only have pain when i am ovulating for 3 days?

Dear JKelly-
Your adenomyosis probably has nothing to do with you 3 day monthly pain. This disease usually produces pain during your period. Some women just experience painful ovulation as part of their cycles. Please read the adenomyosis section of the website for further information about your disease.

Dear Dr. del Junco Jr.,
I am a 38 year old who was diagnosed as having adenomyosis 3 years ago, and at that stage a hysterectomoy was recommended. I resisted this option.
For the first three days of my period blood loss is very heavy, and I feel AWFUL, lacking in energy and just wanting to sleep.I am not anaemic, and so wonder why I feel SO tired at this time, when I am an otherwise healthy woman. Is this tiredness consistent with my condition?
Also, is this a progressive condition, as since my diagnosis I have had no check-ups at all.
Shiona

Dear Shiona-
Adenomyosis is a progressive disease. If not treated bleeding and pain will increase and the size of your uterus will continue to grow. You are young and if left untreated you may be confronted one day with an irreversible decision of hysterectomy. Your feeling of “tiredness” is directly related to the significant blood loss each month, this may not necessarily be associated with anemia. FAS can help you.

I am 48 years old & have anedomyosis. Have had it for several years. I’m holding off on the surgergy hoping I’ll go into menapause.

I have MS & surgery really scares me, but the laser technique sounds a little better. Would like to know more about it. Recovery time, etc.

Sue from N.H.

I was diagnosed with adenomyosis and, unfortunately had a hysterectomy. Now, for the past 8 months, my ovaries have a complex cyst on the left side which is 1.9 cm in size and producing pain lasting 5 days on one side. I live in NY and the docs here do not believe in organ preservation. The one I see wants to pump my body full of birth control pills for two months to see if it stops the pain. He totally disregarded the cysts. What about progesterone? shouldn’t I be taking that? He won’t prescribe it because I don’t have a uterus.

Dear Sue from N.H.
Our FAS laser technique is a great option to hysterectomy for adenomyosis patients. We laser the diseased portion of the uterus, but for those women who do not wish to have any more children, we perform a “debulking” procedure that reduces the size of the uterus and removes excess tissue built up in the organ around the disease. With this procedure patients have had great relief of symptoms and the organ has been preserved for hormone and sexual function. Recovery is approximately 4-6 weeks, since the abdomen is opened. Please let us know if we can help you.

Dear Sue-
Before treating yourself with hormones ie progesterone,I would recommend that you have a complete hormone panel drawn. This will allow your physician to better treat your problem.
If progesterone is recommended, over the counter topical creams are available through many homeopathic and natural health stores, and are very effective.

I am 33 years old and have been diganosed with severe adenomyosis, mild endometreosis, cyst, and adhesions. I would like to have one more child. Is this possible with my uterus being so big? Could I carry a baby full-term? I recently had a tubular pregancy and before that a miscarriage. Are these situations related to my disease? Is FAS the only treatment for my disease? My doctor recommends a hysterectomy.

Dear Karen-
Of all your diagnoses, adenomyosis is the most damaging. The size of your uterus and possibly your miscarriage, could be directly associated with this disease. It is very aggressive, spreads quickly, and can be very debilitating. Depending on the severity and extent of the disease, it can render the uterus incapable of carrying a fetus. I recommend all my patients to have their children as soon as possible. We are the only facility in the country currently offering laser assisted organ preservation, for adenomyosis.I would not recommend a hysterectomy, especially as a first option. Good Luck.

I am 42 yrs old, newly married and trying to have children (none at this time) – after a year of severe pain, heavy bleeding, back pain and ER visits, I had a laparoscopy/D&C done in November 2000. My GYN found that my uterus was ‘boggy’,spongy and enlarged. My tubes, ovaries were clear which was a relief. The GYN could not give me a clear diagnosis of Adenomyosis but felt all symptoms pointed to it. Because of my desire to have children and my age, she has strongly suggested that I get pregnant now or else the pain/symptoms will return soon. After Clomid and months of trying, I still am not pregnant (stress?) and the pain/symptoms have returned in full force. My GYN said the only option that I have now is a hysterectomy. I am devastated and do not want this operation, however, I am in so much pain, especially in my lower back (she indicated that I have implants lodged on the posterior of my uterus) – I have trouble functioning. Also, at the age of 22, I was diagnosed with ovarian cysts and had them removed by laser – my periods have always been heavy, irregular and painful. I am always tired, in pain and have horrible mood swings. If my fertility cannot be salvaged, I want to live pain free, enjoy my husband and new life. Can you help me? May God Bless you ,,,

Dear Mary-
We have many patients like yourself contact our office. With all my patients that have Adeno..I recommend immediate pregnancy, if this is their goal. The longer this disease is allowed to spread the greater the chance of infertility.Adeno attacks the uterus at the muscular layer and eventually reduces the contractility of the organ-many patients miscarry if they are even able to get pregnant. I do not want to discourage you…but do the best you can to get pregnant now!! If this does not work..I can definitely help you. Our FAS procedure will remove the disease and laser treat the remaining muscle..you will be able to keep your organ have no pain and very light periods. Unfortunately, this “debulking” procedure will render you sterile.
Good Luck…please know we can help you after your fertility issues are behind you. Give my office a call.