Does anyone else with endo stuggle with nausea after sex?

[changingthenations]

I am 20 years old and I have been having unbearable periods pretty much since they started 10 years ago. I would get really bad cramps and couldn't survive the first few days without some sort of medication. I had a hard time sleeping with the pain, i also had way too heavy bleeding and hot flashes. The older I became, the worse my periods got until I couldn't take it anymore and started on a bcp (Lo loetstrin). It didn't work at all. I was exhausted and couldn't keep my eyes open in school. I would get my period the week I was supposed to and it would be light and last 5-7 days then the next week I would be fine and the week after that I would have to period again but heavier and more painful. I struggled with getting my period every other week for 7 months until in August of 2014 I had a cyst rupture on my left ovary. I wasn't surprised by this at all because I frequently would get severe sharp pains in my ovaries. I went to my gyno and asked her to switch my pills. I tried 3-4 others and I couldn't last on them for even a full week. I was so sick and so nauseous. (I have dairy and gluten allergies so I checked and all the pills had lactose even though my doctor said she looked up ones that didn't.) during this time is when my really bad periods started. I had 3 excruciating periods before I started taking the patch and it seemed to help with the pain somewhat but I also have another ovarian cyst on my left ovary. With my worst periods I would start the pain a day or two before I even started bleeding. It would come out of no where and it would come hard and come fast. The pain would usually start inside my butt and it felt almost like someone was stabbing me. Then it would progress into my ovaries and my stomach and it got to the point where I couldn't move with out balling my eyes out in pain, I couldn't walk, I couldn't sleep, I couldn't eat, I couldn't drive or work and it lasted for several days. It felt like having a cyst  rupture on both sides x10. I tried the ER but they didn't take me seriously. My new doctor wanted me to stay on the patch contantly and not take it off for the week of my period for 3 months to see if it would help with my cyst and other symptoms. So the first month I didn't take it off I had another extremely bad period and then I bled every day for the next 3 months. after talking to my doctor she wanted me to just take it normally. I've had 4 trans vaginal ultrasounds and my cyst hasn't gone away in 2 years and it still continues to bother me nearly everyday. As of my latest ultrasound a few weeks ago, my cyst is 4cm. I am having problems with my bladder, it gets better and worse from time to time. I feel a pressure pushing on it a lot and it causes frequent urination. I don't know if that is because of my cyst or the endo. I also have a sensitive stomach and struggle with constipation. My last ultrasound confirmed that my cyst is blood filled and because that same cyst has not gone away they are pretty sure it's endo. The worst part of it all though is I just got married about 2 months ago and my husband and I waited until marriage for our first time together and ever since we started having sex I feel even sicker all the time. When we start penetration hurts (and we have tried everything to avoid that, we use lube every time as well, but no change) and during intercourse I get a lot of pelvic pain which makes me so uncomfortable. Then I am nauseous for about 3 days afterwards. It pretty much starts the second we stop and it miserable. I get so nauseous that I can't eat and I feel like a giant mess. I was so sick our entire honeymoon I convinced myself I was pregnant but I'm not. My doctor says maybe the pain is from my bowels because I do get constipated. She wanted me to try the depo provera shot but because I do struggle with depression and I have a very sensitive body I decided against it. She doesn't want to put me through menopause and she said that she wouldn't do surgery until my cyst was 10cm because I run the risk of losing part or all of my left ovary. I feel so helpless and so sick all the time. I have been in and out of doctors offices my whole life and no one ever helps me and now that my gyno thinks I have endo I finally have an answer but there's been zero progress to help me feel better. I want to go off my bc soon and try for a baby but I am so scared to go back to feeling even worse than I do right now.  Any advice?  Anyone else get nauseous after sex?

[ticked]

Okay from what it sounds you need to do a couple of things and I will give some suggestions.

1) Change doctors.
2) Trust your body and be your own advocate
3) Have you actually had surgery ever to diagnose endometriosis or did they just tell you that you have it? This is imperative so please let me know.
4) The fact that the cyst is blood filled means that is an Endometrioma it will not disappear and will continue to grow.
5) An Endometrioma is an indicator of moderate to severe disease. I am no doctor but from what you have described it sounds like stage IV endo.
6) Rectal pain could be caused by Rectovaginal Endometriosis which could also be why you are having the rectal pain and pain during sex.
7) Nausea is one of the many symptoms that go along with Endometrioisis but for me no I didn't have it after sex but it doesn't mean that I am the same as everyone else. We all experience things differently.
8) Do you have the results of your ultrasound report? If not get that copy and all copies regarding the tests you are going though and document the meds that you have been on and what did not work. Also if you did have surgery get that surgical report it is imperative and will make a huge difference when seeing a surgeon that specializes in this disease.

9) You need to find an Endometriosis specialist and I can help you with that. You need the best of the best. If you did have surgery it was most likely with a regular OBGYN who wouldn't have the skill or knowledge when it comes to this disease.

There is no cure for Endo but you can get substantial relief by going to the right surgeon. An Endo surgeon excises the disease (cuts out from the root) where a GYNO uses ablation (laser) which only gets the surface of the disease leaving behind the disease to keep growing. Endo also has many looks, colors and textures so a regular gyno most likely would not be up to date with this also they wouldn't have the skill because it takes a while to learn excision and not many surgeons can do it properly. It is a multi organ disease and you need a multidisciplinary approach and you will just not get that unless you go to an Endo specialist.    

Please feel free to message me here and/or read my journals as some of what I have here in my bio you might relate to. I am also on social media all over raising awareness and helping others leading them in the right direction. My handle is @EndEndoForever and I am also known as #Thefacesofendo so please reach out. There is proper care out there so don't lose hope :)

[changingthenations]

I'm sorry it took me so long to get back to you. For some reason I never saw your comment. I've had 4 Transvaginal ultrasounds in the last 1.5-2 years. In all of which I had a cyst on my left ovary. My last ultrasound a few months back confirmed it was blood filled. Based on my symptoms and the fact that my cyst has been there for so long, growing and blood filled my doctor believes I have endo. I never had surgery to officially diagnose me with endo. My obgyn said she wouldn't perform surgery on me for a few reasons: I'm "young" and she's concerned that if I was to have surgery they may not only have to remove my cyst but also my entire ovary. My obgyn also said they would do surgery if my cyst was 10cm but my is only 4cm as of my last ultrasound. Honestly I'm miserable. My pain was getting a lot more manageable being on bc but now it seems it's worse. I feel symptoms of endo and "pms" coming on 2 or so weeks before my period. There's may be one week out of the month I feel decent. That's if the nausea doesn't kick in. I start spoting two weeks before. (Which i never used to until maybe the padt year.) Usually 1 day or 2 before I start bleeding most of my pain is in my rectum. It almost feels like someone is stabbing me and I can feel it all the way through to the front of my pelvis. It's so uncomfortable. When I try to use the bathroom the pain gets worse and my cyst gets really sore too. The nausea is so awful. I have such a hard time eating. I'm sick all the time. It's got to the point where I cancel plans and have to stay at home. Sometimes it lasts for a minimum of a week. It makes it hard to function and enjoy day to dayevents I'm trying to be strong but I'm so beyond frustrated. My husband and I really want to start a family soon and I am so scared to go off my bc and feel worse. The periods off my bc was the most pain I have ever experienced. I am scared to feel that way again. I would really like to find a specialist in my area. I think that is my only hope. I also am working on changing my diet.  I want to exercise but it really aggravates my cyst. I keep getting sicker and sicker and the symptoms keep piling up. I'm desperate to feel better.