I also have endometriosis and adenomyosis, so I definitely relate to your problems. I'm in my mid-30s, and much like you, I do not want to have my uterus removed. Even though the hysterectomy would most likely help my pain, I really want to have children. Once I've had a child though, I will most likely make the decision to remove the uterus.
You mentioned that you are afraid of the surgery. Do you mean that you're scared of the procedure, or do you mean that you want to keep your uterus? If you're scared of the surgery, I can reassure you that it isn't a bad procedure with today's technology. One of my friends recently had a hysterectomy performed vaginally, and she had a very fast recovery. Surgery is scary. But, sometimes, it is worth facing the fear to achieve a life filled with less pain.
Many doctors definitely push women to have hysterectomies, but the ultimate decision should always lie with the woman. Whatever you decide, there are options to control your symptoms. The pain and excess bleeding associated with adeno and endo is indeed horrible, so it's very important to find ways to control both problems.
Have you tried any of the hormonal treatments for endometriosis? Continuous birth control pills provide relief to many women. You stop having periods, which helps quiet adenomyosis problems. Also, I've met many women that have had a great deal of success with a drug called Depo-provera. (I imagine that it's available in Malaysia too. Basically, it's an injectable form of the hormone progesterone. It is usually used as a birth control method.)
Lupron is often used by gynecologists in the United States to control endo and adeno, but the side effects can be awful. You can only take Lupron for six months at a time, and usually, the pain returns after it is discontinued. Thus, Lupron isn't considered to be a wonderful medication for endo by many people (including myself).
Adenomyosis is very difficult to treat. Is your adenomyosis diffuse, or is it localized to one area in your uterus? If the endometrium is diffusely located throughout the muscular layer of your uterus, the only way to eradicate the pain is to have a hysterectomy. Occasionally, the endometrium will be localized to a small area in the muscular layer though, and when that happens, a surgeon can excise the adenomyosis and preserve the uterus. Have you ever had a MRI? That can sometimes determine if adenomyosis is diffuse or localized to one location.
Concerning your ovarian cysts, are they endometriomas? Endometriomas are cysts that form as a result of endometriosis, and they're filled with old blood that resembles chocolate. (They're often referred to as "chocolate cysts" for that reason.) If you have endometriomas, it is important to find a surgeon that is experienced in endometriosis surgery. Often, gynecologists will just drain the cysts and leave the remnants of the cyst behind. When that happens, the cysts quickly refill with blood after surgery, leading to a woman developing multiple cysts on the same ovary. It is vitally important for the surgeon to remove the entire cyst and not just drain the fluid. Three years ago, I had a huge cyst on my ovary, and my surgeon spent a long time dissecting it from the ovary. She was able to remove the entire cyst, and it has not returned. Have you had surgery to remove the cysts from your ovary?
If you have not yet tried any hormonal medications, like birth control pills, I highly recommend that you give them a try. You may be able to manage your symptoms so that you can avoid a hysterectomy. Another option is to have a uterine ablation performed. The ablation removes the endometrium lining from your uterus, thus stopping mentrual flow. You will be unable to have children if you have an ablation performed though.
Do you take iron supplements to help with your anemia? If not, that may help you tremendously.
I hope that I've helped. I definitely understand what you're going through right now. You are not alone. If you have any questions, please let me know. Take care of yourself, and stay strong.
Best wishes, and good luck.
Thank you, Wishful for responding. Have you ever tried alternative medicine for endo & adenomyosis? There are some literatures on Natural Progesterone Cream etc. Have anyone tried it and give good results? I hope to get some feedback on this. Thank you.
Thank you so much Denise. So you are one of those angels in NICU. God bless you. My youngest was in NICU as well but only for 8 days and then I fought to bring her home. My son was in NICU for 6 weeks before we moved into hospice care. They were wonderful as well, they prepaed a nice little private room for us with a crib and a bed so I could stay there with him.
They are leaving my ovaries in. The doctor said that my recovery would be similar to my c-section, about 6 to 8 weeks especially since I have extensive scar tissue. she said I would be in the hospital for a few days but I will definitely ask for more definitive answers because I have arrangements that must be made. The question about anesthesia is a great one, I will be asking that asap. I got a spinal for my las c-section, I was not expecting to be awake, it was the worst experience! I never want to go through anything like that again. So if I can get general, that is darn sure what I want. Again, thank you for answering me. I am sure you will see a lot more of me on these boards in the coming months.
JDen, I feel your pain. I'd had several abdominal surgeries prior to the big open hyst, and only thought I knew what i was getting myself into by agreeing to have the open procedure as opposed to the vaginal hyst. If I remember correctly, I was catheterized and bed-bound for 2 days post-op, with "air socks" on my legs. The socks were funny the way they'd blow up and slowly flatten out over and over again. Great for the leg circulation while you're stuck in bed, and BONUS! they're warm.
I had a constant small amount of demoral in my IV and the PCA machine if i needed extra. Took me a while to figure out that my urine retention was due entirely to the pain meds. UGH! Nothing like cramps from a full and angry bladder to keep you up at night.
The thing I most remember was the absolute fatigue that lasted for a full 8 weeks. It only took a few days for me to start wanting to move around the house and grounds, and all at once my body would be screaming for a nap. Me? A nap? No way! I NEVER take naps. Well, then I did - a good 2 or 3 of them a day. Even though the outside incision seems to be nearly fully healed, you have to remember there is still a whole lot of healing going on inside, and that healing needs calories. I ate very well during those weeks, and expected to gain weight because i was doing so little physically. Turns out I actually lost 10 pounds. After the first couple of weeks, i also found that B-Complex 100 vitamins helped noticeably with the energy and feelings of narcolepsy. ;-)
You just have to go slow and do what your body tells you to do - like SLEEP! NOW! :-D
I have to mention a complication that happened to me. I ended up with huge, ropy adhesions (scar tissue) all over my intestines that caused several obstructions. Three months later, I needed a pretty long sigmoid colon resection because of the damage the scar tissue had caused. Even with all that, I was, and am, still very glad to have just gotten rid of that uterus and don't miss that thing one little bit. Hope it all goes very well for you!
From my research, adenomyosis will not stop you from conceiving, in fact, if you conceive, the adenomyosis will improve because the moment you conceive, you will not have period, that will relieve your uterus from bleeding due to adenomyosis. Endometriosis will reduce the chances of conceiving. You did mention you have fibroid, I think you must try to ascertain what you have is adenomyosis or fibroid. Adenomyosis usually happen to woman after 40!
I just joined this site today, and was reading over many of the comments. I found alot of this helpful, but I really NEED YOUR INFO AND HELP!
I just passed my RN-NCLEX recently, so this may seem odd that I am asking questions like this, but to be honest, I do not know alot about this subject.
I am 29 years old, and I just got diagnosed with adenomyosis and also during a u/s they found a mass on my ovary that the ob says "needs to be removed now, because it recieves blood flow." I however have no insurance at this time because I am in the process of getting a job at the hospital now. I am afraid, because the ob kept saying "because of your age, the chances of you having cancer are rare." well. I know from experience in the hospitals that young people get looked over all the time when they REALLY in fact have problems. He also told me before the u/s that he did not think I had anything but cysts because of my age. Then he found adenomyomas.
Now, here are my questions. I have three children, but I am divorced from there father- I am now with a wonderful man who i love very much. I thought that I was done having children, but he only has one daughter that was born while he was serving in the military...he hardly gets to see her (mother lives in tx.) We both love all the children soooo much, but he wants another. he is 26 years old, so hearing this was hard for him. I have read up on adenomyoma and asked fellow nursing pals, half say I wont have a child again, the other half say it is possible. I am very thankful for the children that I have, and if I cant, well then I will have to accept it i guess. I have THREE BOYS and I love them dearly. BUT WILL I EVER BE ABLE TO CONCIEVE AGAIN?
Now, my doctor has not said that he wants my uterus removed. he told me it is enlarged, he also said that i DONT have endometriosis. He stated that I just have "some pockets of adenomyoma" . he is more worried about my mass for now that needs to be removed. Now my symptoms were having periods anywhere from 20-23 days apart, they are heavy, no big clots though. I have some pain during intercourse and some mild cramping during menstration. the reason I went to see the doctor is because I would get two periods a month sometimes, and wanted to find out. I am very scared that he will tell me I need my uterus removed at the age of 29!!!!
Thank you for listening.
Shanna R.N. that is scared!!!!! lol