Connect
DES daughter with anxiety and a mixed bag of other issues
I am a 67 year old DES daughter. My mother had a miscarriage the year before I was born and then started having problems with me- believe it was after the second month she started a course of injections. She lived to age 94, died from a stroke. Had a mass on her left ovary that didn't grow, no breast cancer. She had anxiety and panic attacks from 30s until she got sick and passed. She had diabetes and HTN.
I'd had a terrible time when young- amenorrhea, hypothyroidism, anxiety, irritability, unrelenting insomnia, yeast infections. I did manage to get pregnant finally and and after the birth of my second child, no longer had to take medication to have a period. I had a very long labor the first time and had to be induced finally. I suffered from preeclampsia that time and while I didn't have the edema the 2nd time, I had the hypertension. Vomiting most of each pregnancy and during labor. I was thankful to have the 2 kids but no more of that for me.
My periods were so bad that I was on Darvocet for 20 years , 3 days out of each cycle. Ovarian cysts that were very painful and excruciating pain on the first day when I just spotted- which decreased on the 3rd day when I started bleeding like crazy- wearing a super tampon and overnight pads in unison, changed frequently. This went on to my very last period at age 41 when I had a ruptured cyst and developed infection and had everything but my dysfunctional right over removed. What a relief! I was a new person. I had hyperprolactinemia for a long time- now I have a new breast cyst they're watching so it's back to every 6 month mammograms. I also had started perimenopause and needed to use a progesterone cream, rubbed it into my thigh every evening at bedtime at age 34. I did that for a couple years.
I've had IBS for as long as I can remember, which was diagnosed at age 15. That's still with me, along with lymphocytic colitis diagnosed nearly 10 years ago. I also suffer chronic insomnia, due to the anxiety I guess, which has been successfully managed with low dose bedtime alprazolam, which is hard to come by. I was on SSRIs and other meds for it in the past which I found I couldn't tolerate without diarrhea and abdominal pain and other weird side effects. In fact, there's a whole slew of OTC and other meds I cannot take due to the gut symptoms and side effects. Not always the common ones, but the lesser ones that only 3-5% might get. It's like all my brain and gut receptors are at war. Does anyone else have this? It's awful and I feel like everyone thinks I'm just crazy. I don't get a lot of empathy from the healthcare field in general and it's not a good feeling.
Like
Helpful
HugInterested in more discussions like this? Go to the Women's Health Support Group.
Connect
Hi Lesa458,
I'm so sorry that you have had and are having such terrible problems and for most of your life!! How awful for you! That's too bad that the doctors aren't taking your situation more seriously! I would think a trained medical proffessional would find your complicated situation an interesting challenge from a medical standpoint to figure out. Doctors are supposed to help us!
I don't have anything like this but I would suggest that you check the side effects of all of your medications and over the counter medications to see if any of them interact with each other or cause some of your symptoms. Also research what healthy foods might help with your symptoms and eat those foods more often. I know that at age 79 when I'm not feeling my best I eat nuts or yogurt and drink tea. They help me feel back to normal again. Try and find what healthy food or beverages works for you. By healthy I'm referring to foods with no preservatives in them. Also drinking a lot of water really helps your body too. As we age we need more water than we used to. At least I do. Water flushes out all the impurities in your body and that helps your body to heal.
The other thing that works well is prayer. Ask God for his help. Just talk to him like he's your best friend and he is! After all, he made you and he can fix you! I'll say a prayer for you also.
I wish you the best.
PML
-
Like -
Helpful -
Hug
2 ReactionsI agree with the person ahead of me.
Make sure you eat organic foods. They have not been treated with many chemicals.
Check the side effects of all your medications and vitamins you are taking. There could be reactions between the vitamins and your prescription drugs.
Check with the pharmacy you use to see if there is a pharmacist you can sit down with and go over all your medications and vitamins with the side effects.
Google each medication look for side effects drug interactions as well with your vitamins.
I have to do that due to my sensitivities to chemicals and dies
I wish you the very best
-
Like -
Helpful -
Hug
1 ReactionExposure to DES in utero has affected us in so many ways. I am sorry to hear what you have been dealing with. I am a DES Daughter and had ectopic pregnancies and many other health issues.
I am the Administrator for DES Info Association. I am attaching our DES pamphlet for your review
Caring for the Diethylstilbestrol Exposed Patient Pamphlet-June 2024 Update (Caring-for-the-Diethylstilbestrol-Exposed-Patient-Pamphlet-June-2024-Update.pdf)
-
Like -
Helpful -
Hug
2 ReactionsThank you for the well wishes.
I do check everything now. I have learned that I have to approach issues with a topical or localized treatment now. If I have a cold, tylenol, saline spray and lots of fluids. I only take digestive enzymes - pre and pro biotics, and have settled on 2 brands through trial and error. Vit B12 and D3 I have to take sublingual. Haven't found a calcium supplement yet that I can take or Vitamin C, so I have to try to get as much of that as I can through my diet.
When I worked, I was a Med Surg nurse for some years, so I learned how to research drug side effects. Some sources only gave me the main side effects but if I went to the PDR it showed all the post marketing findings and implications, so I am very careful with that. When I joined a group for Microscopic colitis is when I found resources implicating the use of SSRIs, Lisinopril, and Ibuprofen as contributing to the development of the disease. I learned over the years since I was a teen that I can eat some things with other things and not have a problem, but I can't eat them alone. Crazy.
Been replacing my clothing with organic cotton and working with the derm NP on skin products. I'm with you on the chemicals and dyes.
It's just hard to get across to some doctors about DES. All they can see is the cancer end of it- not the other damage that it's done to the women that were exposed in utero. I'm very thankful that I wasn't one of the young girls that developed cancer when they got to puberty.
Thanks again for the well wishes. I hope that it all goes well with you also. We have to remain diligent.
@kmfdallas Thank you so much! I downloaded and printed it off.
@pml Prayer helps. I ask for His guidance every day. He is a better friend to me than I am sometimes.
I don't drink a lot of water, but I am working on it. I check labels anyway because my husband has diabetes. Crazy the amounts of sugar in foods- why do we need sugar in everything?
Thank you for your prayers. I am so glad I found you all here.
-
Like -
Helpful -
Hug
1 ReactionHello @lesa458
On Connect, there is another discussion about DES that might interest you. Here is the link to that discussion.
https://connect.mayoclinic.org/discussion/diethylstilbestrol-d-e-s/
In one of the posts, you will find a pamphlet you can print for more information.
-
Like -
Helpful -
Hug
1 Reaction@lesa458
I'm so glad that you have God in your life! He will help you and your husband with all of your problems. I know he has really helped me a lot since my husband died of lung cancer. I'm not feeling so lonely now and I do know that my husband is up in Heaven and we'll be together again in God's time.
About drinking water. Can you drink ice water? It seems to taste better with the ice. Also try drinking some water on every commercial when you watch TV or listen to the Radio. They have a lot of commercials on both. That way you will get a lot more water.
I'll say a prayer for both you and your husband.
I wish you the best.
PML
-
Like -
Helpful -
Hug
1 ReactionThank you! I downloaded one and made copies for my kids and one for my doctor.
I've found that doctors always think of DES as a risk of cervical cancer and reproductive disorders-nothing more. People that have been exposed know it's a heck of a lot more than that.