Birth control to suppress endometriosis

Hi ladies,

Wondering what your thoughts are on using birth control to suppress endometriosis. Did it work for any of you? If so, how long did it last before you u noticed symptoms again? Or is it just a bandaid on an open wound?

My doctor has recommended me trying the pill. I am not sure I want to and I feel if I say no then this is the end of my road and go back to being in pain. I had a hysterectomy in 2014 and have 1 ovary. About 6 months later endometriosis came back. I am currently on Lupron but it is time to get off from it and this what is being recommended "the pill".

Thanks ladies for your thoughts

Hi! Just curious on the reason for your hysterectomy. Have you seen an endo specialist? Here's my experience... I had endo for many years. Ablation 10 yrs ago before I knew so much more about it now. After that surgery, I was put on the pill continuously to suppress cycles. Not endo from progressing. It helped with some symptoms of painful periods but in the end the symptoms outgrew any band aid I put over it. And my body only let me go about 3 months before it made me still have a period. If I tried to take the pill beyond 9 weeks at a time I prolonged pms symptoms and would start spotting so I just stopped every 3 months and had a cycle. It helped it wasn't every month though. Once I researched and found I needed excison of endo by a specialist my life changed. Last year the specialist suspected from ultrasound that I also had adenomyosis which would explain the constant pressure I was feeling. Without hesitation I was ready to schedule hysterectomy and excison of endo. All those symptom are gone now. I still get ocassional cramping and ovary pain during what would still be a cycle it's just hard to know because we don't bleed now. I don't think the pill is going to help control your endo it may just help you through the journey but it's going to continue to be there and even grow. I'd suggest a specialist. And if you had a hysterectomy only for endo because they said that was an option, you were unfortunately misled. Endo can be on your ligaments and surface areas that have nothing to do with your uterus and will continue to thrive without it. And lupron definitely isn't something you want to be taking from all I read about. It can do more harm than good in most cases. I hope it doesn't for you. I hope that helped a little bit, good luck. Remember find a specialist. Gyns have very little knowledge and skills when it comes to endo treatment. It sucks!

This is a very good question. I had a hysterectomy, keeping one ovary, 3 years ago today, 3/30/2018, and it was discovered then that I had stage 4 endometriosis. I was told afterward that I had to take birth control from now on to suppress it. I took them until January of this year when I decided to stop for various reasons. I am starting to have little pains here and there indicating that the endo is starting to reoccur. I would be interested to see what others have to report if they also deal with this. I will say this, that while I was not put into menopause with my hysterectomy, the doctor did tell me to never take any hormone replacements because it will cause the endo to grow uncontrolled.

I'm curious, when they did the hysterectomy did they actually remove the endometriosis itself? Endometriosis by definition occurs outside of the uterus. Removing your organs doesn't remove the endometriosis. If they just lasered it (also called ablation) or they aren't trained to get endo in hard to reach places or on/around organs they're not trained to do surgery around that could be missed endo. Here's the thing: I think you need to get beyond "they told me." And I don't mean that in a rude way, but as you're finding you need more than that. One theory of endometriosis is that the tissue is laid down during fetal development and is triggered when the body starts producing estrogen. If that is true then a very, very good excision surgery in which endo is cut out with wide margins could get it all definitively and many have had that experience. The problem is traditional OB GYNs come at this completely backwards. My estrogen is not my disease. Unless you have a uterine condition, your uterus is not your disease. Your uterus is not endometriosis. The disease is the endometriosis tissue that causes scarring, bleeding, etc. Please do a bit of research on excision surgery with an endometriosis specialist and the outcomes for that.

Now. . .this was my very opinionated endo advocate voice that is a bit angry at the backwards medical treatment of women's health issues. So please take it with a grain of salt and best of luck on your journey. I hope you feel well soon!

Having been on The Pill for various non-BC issues, I'd steer clear if possible. Unfortunately, doctors are very limited in terms of endo treatments, particularly in the US. Doctors in Europe have more options. In Germany, they use an herb called vitex, which I have discussed on these forums before. Vitex is inexpensive, generally safe, and can help with the majority of feminine issues, including endo. I started using it last year and have been pleased with the results, even though I no longer have ovaries.

I had a hysterectomy due to endometriosis. I will say at the time I was not very informed to what it was exactly or that there was a possibility it would come back. I felt as though my doctor at the time knew what she was doing and she was the 1st of a few to say this is what's going on and here is a path. She did my diagnostic laparoscopy. Before I even left the hospital I was having an issue of emptying my bladder but they didn't seem to care. I was back in the doc office because I couldn't empty my bladder and my pain of being up and down to the bathroom was horrible. She didn't understand why I was having this issue cause she never went near my bladder. I had to go see a urologist and in the mean time I had to cath myself. The urologist never examined me. He only looked at the results from my bladder capacity test. My test didn't show much just that I have a shy bladder and need to use public restrooms more when out. But none of it makes sense to me. I started having pain in my bladder a week before my cycle would start. My back would be sore, some days the more I move the worse it gets. My bladder feels full and can't seem to empty all the way and sometimes its full and I can't go and my kidneys and back hurt. Sometimes I get needle like feelings in my bladder and just feel so bloated or like a lot of pressure like someone is bear hugging me. My doctor put me on lupron for 6 months and she said if it helped then she would recommend a full hysterectomy. It helped greatly. So I made the decision. I was supposed to have both ovaries removed but my doctor changed her mind mid surgery and left 1. She had stated that I had more adhesions then endometriosis. About 6 months after my hysterectomy my pain returned and doc put me on norethindrone for my endometriosis. It made my pain worse so she told me that it couldn't be endometriosis cause the norethindrone would have relieved my pain and make the endometriosis go away. (LoL). So she did a test on me for interstitial cystitis. She filled my bladder with saline and nothing happened and then with this other stuff (can't remember the name of it) and again nothing happened. She said if I had interstitial cystitis I would have been in pain or been screaming when she put the other stuff in my bladder. Her next step with me was pelvic floor therapy. She retired shortly after that and I had to find a new doc. I seen another doc in that office but he said surgery to remove my ovary was the only option I had. I moved on. I have done a lot of reading since all of this and have only more questions. I can't go back and change anything and can only go forward. I am really not wanting another surgery for the last one has left a bad taste in my mouth. I am seeing a new doctor and I asked to go back on Lupron. It worked for me in the past and had good results with it. I have been on it for a year and had to do HRT. My doc gave me norethindrone 5mg tablets . I have taken this in the past and it always made my pain worse. This time with being on the luropn and taking it - it has angered my bladder. I let him know and he says I shouldn't be having these kind of side effects cause it just a high end birth control. I took another lower dose of progesterone and had same issues. He seems to think that the endometriosis is in my bladder. So I don't see how a birth control is going to suppress endometriosis for me.

That sounds so rough. I’m sorry for all you’ve been through. It’s so difficult to navigate.

If you’re not wanting surgery and can’t be in Lupron longer due to the limitation for safety reasons one thing I was offered was aromatase inhibitors. It’s sometimes used for breast cancer and other conditions that are hormone dependent and prevents your body from converting some of the testosterone your ovary produces to estrogen. Maybe ask your doc?

My decisions for surgery were based on my age and length of time to probable menopause being too long for me to be ok with the drug options. I had tried orilissa and came to the conclusion docs messing with my hormones was the worst thing for my mental health (I have a strong history of major depression on both sides). I tried the Mirena iud after that and that was awful for me, too.

Bladder wise I had a bad experience with a urologist that treated me like I had overactive bladder. I saw a pelvic pain specialist who referred me to a different urologist who diagnosed and started treating me for IC based on symptoms alone. I had endo on my bladder, the outside of the bladder not the lining, and that was lasered in my first surgery. I’m wondering if there is a better urologist out there who understands your symptoms and history. I had quit seeing the first urologist and it was the pelvic pain doc who said IC when I explained how much bladder pain I am in when I first wake in the morning and as my bladder fills and how it’s tender after I go. She told me IBS and IC are neuropathic pain syndromes. I don’t think I have the “lesion” type of IC. I was treated with bladder instillations, for awhile some diet changes (I love coffee soooo much). I also tried an antihistamine and some SSRIs. my predisposition to mood disorders must make a lot of drugs hard for me bc I notice so much side effect .

The same principle for your bladder endo is, removing your ovary won’t remove the endo from your bladder if that’s what it is, so good for you for looking out for your other options. Of course, your body, your choice, and you get total autonomy over what will bring you peace. Lupron is not high end birth control. It would never be prescribed as birth control by a responsible doctor and cannot be taken for more than 2 years due to the possible effects. I’m glad it worked for you but he is dead wrong and shouldn’t say that. I had worsening pain on Orilissa (a pill that is similar to Lupron - it’s not birth control either), so I feel you. :/

I see the conundrum with birth control not being enough for what you’re dealing with. I hope you find some good solutions.

I’m wondering if there is a way better urologist/urogynecologist that is accessible to you. My bladder pain was def a huge component of my pain last year. The pelvic pain specialist I see helps me find treatments for the different parts of my pelvic pain, so I have quite a team. Ortho for hip/SI joint/scoliosis, urologist for IC, pelvic floor pt, GI for IBS/GERD, the pain person herself for some vulvar skin issues/Vulvodynia. I wasn’t doing anything for my endo specifically. During my hyst for adenomyosis they found one endo nodule. I hope that was the last of it. Like you say, I think I’m done with surgeries. The hyst was supposed to be my last planned surgery in my own mind but I had a complication and I hope the upcoming repair is the last surgery.

	Quote:
Originally Posted by Bee81 I had a hysterectomy due to endometriosis. I will say at the time I was not very informed to what it was exactly or that there was a possibility it would come back. I felt as though my doctor at the time knew what she was doing and she was the 1st of a few to say this is what's going on and here is a path. She did my diagnostic laparoscopy. Before I even left the hospital I was having an issue of emptying my bladder but they didn't seem to care. I was back in the doc office because I couldn't empty my bladder and my pain of being up and down to the bathroom was horrible. She didn't understand why I was having this issue cause she never went near my bladder. I had to go see a urologist and in the mean time I had to cath myself. The urologist never examined me. He only looked at the results from my bladder capacity test. My test didn't show much just that I have a shy bladder and need to use public restrooms more when out. But none of it makes sense to me. I started having pain in my bladder a week before my cycle would start. My back would be sore, some days the more I move the worse it gets. My bladder feels full and can't seem to empty all the way and sometimes its full and I can't go and my kidneys and back hurt. Sometimes I get needle like feelings in my bladder and just feel so bloated or like a lot of pressure like someone is bear hugging me. My doctor put me on lupron for 6 months and she said if it helped then she would recommend a full hysterectomy. It helped greatly. So I made the decision. I was supposed to have both ovaries removed but my doctor changed her mind mid surgery and left 1. She had stated that I had more adhesions then endometriosis. About 6 months after my hysterectomy my pain returned and doc put me on norethindrone for my endometriosis. It made my pain worse so she told me that it couldn't be endometriosis cause the norethindrone would have relieved my pain and make the endometriosis go away. (LoL). So she did a test on me for interstitial cystitis. She filled my bladder with saline and nothing happened and then with this other stuff (can't remember the name of it) and again nothing happened. She said if I had interstitial cystitis I would have been in pain or been screaming when she put the other stuff in my bladder. Her next step with me was pelvic floor therapy. She retired shortly after that and I had to find a new doc. I seen another doc in that office but he said surgery to remove my ovary was the only option I had. I moved on. I have done a lot of reading since all of this and have only more questions. I can't go back and change anything and can only go forward. I am really not wanting another surgery for the last one has left a bad taste in my mouth. I am seeing a new doctor and I asked to go back on Lupron. It worked for me in the past and had good results with it. I have been on it for a year and had to do HRT. My doc gave me norethindrone 5mg tablets . I have taken this in the past and it always made my pain worse. This time with being on the luropn and taking it - it has angered my bladder. I let him know and he says I shouldn't be having these kind of side effects cause it just a high end birth control. I took another lower dose of progesterone and had same issues. He seems to think that the endometriosis is in my bladder. So I don't see how a birth control is going to suppress endometriosis for me.

	Quote:
Originally Posted by Bee81 I had a hysterectomy due to endometriosis. I will say at the time I was not very informed to what it was exactly or that there was a possibility it would come back. I felt as though my doctor at the time knew what she was doing and she was the 1st of a few to say this is what's going on and here is a path. She did my diagnostic laparoscopy. Before I even left the hospital I was having an issue of emptying my bladder but they didn't seem to care. I was back in the doc office because I couldn't empty my bladder and my pain of being up and down to the bathroom was horrible. She didn't understand why I was having this issue cause she never went near my bladder. I had to go see a urologist and in the mean time I had to cath myself. The urologist never examined me. He only looked at the results from my bladder capacity test. My test didn't show much just that I have a shy bladder and need to use public restrooms more when out. But none of it makes sense to me. I started having pain in my bladder a week before my cycle would start. My back would be sore, some days the more I move the worse it gets. My bladder feels full and can't seem to empty all the way and sometimes its full and I can't go and my kidneys and back hurt. Sometimes I get needle like feelings in my bladder and just feel so bloated or like a lot of pressure like someone is bear hugging me. My doctor put me on lupron for 6 months and she said if it helped then she would recommend a full hysterectomy. It helped greatly. So I made the decision. I was supposed to have both ovaries removed but my doctor changed her mind mid surgery and left 1. She had stated that I had more adhesions then endometriosis. About 6 months after my hysterectomy my pain returned and doc put me on norethindrone for my endometriosis. It made my pain worse so she told me that it couldn't be endometriosis cause the norethindrone would have relieved my pain and make the endometriosis go away. (LoL). So she did a test on me for interstitial cystitis. She filled my bladder with saline and nothing happened and then with this other stuff (can't remember the name of it) and again nothing happened. She said if I had interstitial cystitis I would have been in pain or been screaming when she put the other stuff in my bladder. Her next step with me was pelvic floor therapy. She retired shortly after that and I had to find a new doc. I seen another doc in that office but he said surgery to remove my ovary was the only option I had. I moved on. I have done a lot of reading since all of this and have only more questions. I can't go back and change anything and can only go forward. I am really not wanting another surgery for the last one has left a bad taste in my mouth. I am seeing a new doctor and I asked to go back on Lupron. It worked for me in the past and had good results with it. I have been on it for a year and had to do HRT. My doc gave me norethindrone 5mg tablets . I have taken this in the past and it always made my pain worse. This time with being on the luropn and taking it - it has angered my bladder. I let him know and he says I shouldn't be having these kind of side effects cause it just a high end birth control. I took another lower dose of progesterone and had same issues. He seems to think that the endometriosis is in my bladder. So I don't see how a birth control is going to suppress endometriosis for me.

Please see my comment about vitex. Not saying it's a cure-all, but it's prescribed for endo in some European countries, and it may help in your situation.

	Quote:
Originally Posted by Donnaguska Having been on The Pill for various non-BC issues, I'd steer clear if possible. Unfortunately, doctors are very limited in terms of endo treatments, particularly in the US. Doctors in Europe have more options. In Germany, they use an herb called vitex, which I have discussed on these forums before. Vitex is inexpensive, generally safe, and can help with the majority of feminine issues, including endo. I started using it last year and have been pleased with the results, even though I no longer have ovaries.

Thank you Donnaguska for the info about vitex. I checked out the website and I don't think I would benefit from it. It's kinda confusing because it says it can help regulate your hormones after taking it for 4 to 5 months. But also says it boosts your progesterone levels if taken in low dose and lowers your estrogen. When I was taking northindrone which is a progesterone it caused my symptoms to become worse. So I would like to stay clear of that. This is why I am uncertain about a birth control working for me.

Thank you Britabee. It has been a long ride and I am ready to get off. Just wanted to clarify that my doctor was talking about the northindrone tablets to be a high end birth control not the lupron. I was thinking the same thing about going to see a different urologist and maybe finding another doctor for my endometriosis. The one i have now seems knowledgeable but after doing some reading on him - he's not a specialist for endo. I go to see my family doc in a few days and going to get her thoughts.

It sounds like you have quite the team of doctors. I hope your upcoming surgery is the last and that there is no more complications for you. I pry that you get to find your exit soon from this ride.