I have not had issues with pain/sex/bleeding so I can't comment on that. It certainly sounds worthy of talking to your doc!
I am so happy to find this site and read about people having the same issues!! In 2008 after delivering my last child I decided to have a tubal. Things went fine with that, however I had VERY heavy bleeding. I discussed this with my obgyn and deciced to have an ablation in November of 2009. My entire life has been affected by this choice from the second I woke up!! I came out of recovery after the ablation and woke up writhing around in pain and crying. I had to be put back into the post op area and started and pain meds intraveniously to get the pain under control. After leaving the hospital things were ok. The ablation helped with the bleeding, however I do still get a period. It comes and goes randomly..... It has come anywhere from every other week to every other month but the bleeding has not been heavy. I have had abdominal cramping almost constantly since then though. It didn't seem to be related to my period, it was just pretty steady. It wasn't too much to deal with from 09 until July of this year so I opted to not do anything and just deal with it. Gradually over the years the pain did get more intense about 5 days before my period and for the first two days and would then return to being very minimal. In July I experienced the most painful period I have ever had in my life!! I was completely laid up for about 3 days of that time. The cramping did let up after that period but not to the degree it had been previously. Then the last week of July I again experienced the same horrific pain..... as bad as the labor pains with any of my three children. It again subsided, but not as it had been before July. The second week of August, I started experiencing shooting pains on my right side when I was driving... from pushing down on the accelorator. I then called and made an appt with my obgyn but couldn't get in until the beggining of September. Over the years my doctors explanations have ranged from my body just taking longer to adjust, to her telling me she has seen a couple times where women who have ablations after a tubal have discomfort because the two procedures just "didn't mesh well". The last annual exam I had she told me that she thought maybe there were some pockets of fluid left behind or that the lining of the uterus had been embedded in the uterun wall, both of which she said were virtually impossible to diagnose and could only be cured with a hysterectomy. I again got a period at the end of August, however this time the cramping never went away. I ended up in urgent care six days before my appt because I was in so much pain I didn't think I'd be able to return to my job with the school district. He prescribed percocet, which helped the pain. Three days after that I got slapped on the rear end and immediately dropped to the floor in excruciating pain. It felt as if my right ovary had exploded. I went to the ER where they did a vaginal ultrasound and foung nothing. I was released with pain meds and prceded to my appt two days later. At my appt my dr did a CT scan and found nothing. She started me on Depot Lupron injections hoping that shutting the ovaries down would help with the pain. The pain has SEVERELY increased folowing the injection!! I am now taking 2 percocet every four hours just to stay comfortable. At my appt today, my doc has basically said again she doesn't know what is causing the pain and is even unsure if the Lupron or a hysterectomy will help!! I am BESIDE myself with frusteration and cannot BELIEVE there is no way to figure this out!!! I saw someone post about a doc in the minneapolis area, which is where I am. I am begging for any more info or the name of SOMEONE who knows what they are talking about and can help!!
I, too, am in the minneapolis area. The OGBYN that initially figured out about the pockets of fluid was a doctor in Edina that I saw with the Southdale OBGYN group. However, I ended up at Mayo in Rochester where I was most happy. The Rochester Clinic was not easy to get into ... it took a bit of time to get records there and become a patient. From what you describe because your pain is so consistent, I'm not sure I would recommend that process.... I started that process when my pains were coming every third week or so. As I got closer to the hysterectomy that I eventually had here in Burnsville, the pains were more frequent and I wouldn't have had the strength to deal with becoming a patient at Mayo Clinic, getting all records there, etc.
I do not know many doctors in the Minneapolis area.... but as I said, it was a doctor at Southdale OBGYN that initially discovered the pockets of fluid. My CT Scans were normal... there was a slight indication of the pockets of fluid on the vaginal ultrasounds I had but nothing that alerted the doctor to indicate the kind of pain I was having.
I, too, had had a tubal ligation... but mine was done at the same time as the ablation.
When I ended up at Mayo, the doctor prescribed a pain med that didn't have the quantity of tylenol in it that the regular percocet I was taking because she didn't want side effects of all that tylenol on other organs. It might be worth asking about. I don't remember much of that day as my husband was driving me 90mph to Mayo from the South Metro because I was in so much pain. The vaginal ultrasound I had at Mayo that day confirmed the pockets of fluid. (Who'd have thought that pockets of fluid could be so painful?)
All I know is that the pain was the worst I've ever experienced.... way worse than childbirth... hence my name, "DEATH PAINS."
I wish you the best and will keep an eye on this blog as it's painful to see that so many women are experiencing what I did. :(
mnfun2bme - Thank you so much for responding!! I can't tell you how comforting it is to actually communicate with another person that has some experience with this!!!! I had another appt last Thursday which left me furious and in search of another doc. She has been suggesting a hysterectomy for the last two years but i have been holding out since the cramping wasn't anything I couldn't deal with, and I've been leary of opting for another surgery since the ablation didn't go as I had anticipated. Thursday my doc told me she thinks that I may just have a low pain tolerance! I was EXTREMELY upset by this, as I had been feeling like she didn't believe me and now just came out and pretty much said so. I asked her about moving forward with the hysterectomy, and she is now telling me that she is unsure that that is the solution!!!! She said that ultimately she may not know anything about the cause until she sees how I respond to the depot lupron, and that may take up to three months!!!!! For those who have had their doctors see the pockets of fluid, what procedures were done? There was no mention of anything like that after my ultrasound or hysterectomy. Did you undergo laproscopy, and if so what were the results of that? My doc hasn't even suggested that and I am concerned now after my appt Thursday that I was started on the lupron without any kind of diagnosis to suggest it will actually help. Has anyone else recieved this treatment? Even the nurse that administered the shot said she didn't know anything about it because they don't give many of them. It's a once a month shot that you get for six months that essentially shuts the ovaries down by stopping the production of estrogen. Your body reacts as though you are in menopause. Initially when she started this she had told me there may be flares of my current symptoms worsening for a couple weeks before the estrogen levels receded. I am depserate for all the info I can get! Obgyn had also said that if anyone reccomended a hysterectomy at this point that their motives for that would be for money!! I am beside myself after that appt! Thank you again for your response!! I am at an all time emotional, mental, and physical low and just want my life back!!!!
I'm sorry you are experiencing this. It's never any fun to be treated like this. I can tell you that I have an extremely HIGH pain tolerance. I grew up working in the cornfields and have worked extremely hard my whole life... I have never had time to deal with pain so I've always blown it off to the best of my ability. For me to start hypervenhilating at Mayo Clinic because I was in so much pain and to nickname the pains, "the death pains," I can assure people that these pains were VERY real. With that said, I can tell you that I also went the Lupron route at the recommendation of the doctor I saw at Mayo Clinic. It was her belief that if we could fool the body into thinking I was in menopause, I would not accumulate the pockets of fluid each month and therefore would not experience that pain each month. I found a flaw in that in the sense that I was having the pains way more frequently than each month, however, like you, I was hesitant to have another surgery after dealing with the implications of the ablation. I started taking the lupron and within a week, I was almost emotionally out of control. Mentally I could not control my emotions. I felt I was at a constant state of the worst PMS I had ever experienced. I set that aside and tried to keep my wits as I let the drug "settle in." After over a month on the drug, I determined that living in that heightened sense of emotion and not really in control of who I was, I determined that it was not the route I wanted to continue and I opted for a hysterectomy which was the other option I had discussed with the doctor when I was put on Lupron. I felt relatively confident in my choices as I had gotten the same opinions from a doctor at the Southdale OBGYN group as well as a Mayo specialist. They both offered the same suggestions and I took what I considered to be the least invasive option first. It simply did not work for me. If you'd read back on any of my posts or history, you probably already know that I ended up with a laproscopic hysterectomy.... certainly not a "walk in the park" recovery... but I'm happy I made the choice. I am now 1.5 years post hysterectomy and all is well thus far. (Please know that 1.5 years post ablation all was well, too). I am cautiously optimistic that things will continue to be good. I did not undergo a laproscopy. I think a doctor at Mayo mentioned it at one point but didn't necessarily feel it was a long term solution. Keep me posted!
mnfun2bme.... Thank you again for your response!! It's amazing how much support I have felt from you and this site!! I have some updates to report..... I did make an appointment for a second opinion after our last conversation. I was referred to a clinic by a coworker who had a hysterectomy done over the summer. I think it's the same one you mentioned..... Minnesota gynecology and surgery in Edina, right across from Southdale. After talking with you, I ended up having my period which brought me some relief for about a week. It's amazing how your concept of pain changes through all of this! I was back to feeling about how I did when I went to Urgent Care at the end of August.... which now seems wonderul!! I had my appointment on Tuesday this week and really liked the doc I saw. After going over everything from the last three years he said that I had adenomyosis and post ablation tubal steralization syndrome. At last FINALLY someone to give me a solid answer and seem very confident..... no "I don't know"s or "I'm not sure"s. He said the PATSS is where there is a section of fallopian tube that is completely closed off from the tubal on one side and the scarring on the other. The blockage stops normal flow and causes swelling and inflamation, hence the pain. He said that adenomyosis is where the lining of the uterus grows deep down in the uteran wall. This is something that my doctor had also mentioned to me at a routine follow up back in June, but when she said it she gave no name and I thought that it was something caused by the ablation. she had said she thought the lining of the uterus had become embedded in the uteran wall. He said that the endomitrian lining was growing down furthur than the ablation reaches, so thats why I still continue to get my period, and that I'm bleeding into the muscles of my uterus wall. SO THANKFUL to have a solid answer, explained and shown to me on charts. He said that a laproscopic partial hysterectomy would be the solution.... they could leave the cervix and ovaries. I left very optimistic and ready to start looking at a plan for scheduling a surgery. Wednesday however the pain returned in full force. I left a message for the new doc, but also called my obgyn who never got back to me. I have only received one lupron shot and don't know how that process is supposed to work. My doctor seemed to be confused at the amount of pain it caused me at the begining. I thought that it kept increasing because I was going to get a period because thats how it has been going, which turned out to be the case. I was under the impression however that after that period the estrogen levels would be dropping so if I was starting to get some relief that it would stay that way. NOT SO apparently!! Is that similar to anything you experienced as well, or was it just affecting your emotions and mental state. On Monday my nurse from the obgyn contacted to tell me my doc would be out of twon starting tomorrow until the 15th, and I'm due for another lupron shot on the 12th. Since this pain is back full on now, I don't know what to do!! I was expecting more than a week and thought things would conitnue to get better from there, and absolutely DO NOT want to go through all this again if it only helps some for such a short period of time. Hopefully the doc in Edina will call tomorrow and I'll be able to switch things over there permanently for this issue. I am just appaled after today again with my nurse, and I felt the Edina doctor was much more knowledgable and would be better equipped to deal with my issues. Thank you again for your continued support!! Hope to hear from you again!! Take care
jhamer - HURRAY FOR YOU!! I'm so glad you opted to find another doc that you can trust and someone who is listening to your issues. How soon can you get in for surgery? The route you are taking is exacly what I did. Laproscopic partial leaving the cervix and ovaries. I am now 46 years old and haven't noticed many effects from the surgery.... although my sex drive may be down a bit.
I would ditch the lupron if you can get in for surgery soon. The issues I had were mainly like PMS issues (mental/emotional out of control.) Now, I know you have experienced the "death pains" as I call them.... but I want you to be aware that the hysterectomy recovery was no walk in the park. Don't get me wrong, I would never go back to the pains I was having prior to surgery......... but I want to caution you:
1. Please do not listen to those people who tell you, "Oh, you're having a laproscopic surgery so your recovery will be minimal." If they tell you 8 weeks recovery (which they should).... they mean 8 weeks. Do not play superwoman here. You get ONE chance to recover and not mess things up. Please BE PATIENT with the recovery.
2. Once surgery is scheduled, join the "hystersister" website. You will be put into a forum with others who are scheduled for surgery the same week as you. It is comforting to go through this with other women and to know what others are experiencing with recovery.
3. HANG UP YOUR SUPERWOMAN CAPE. I'm really not kidding about the recovery. I thought I'd be up and moving around easily in a week. After all, I was in great shape prior to surgery and nothing holds me down ... or at least nothing but death pains (so I thought.) I really can't tell you enough to BE PATIENT with recovery.
4. Depending upon your situation, take any help people offer you during recovery. If you have little kids, plan to have someone there to help you. I was one of those people that didn't ask for help --- I could do everything myself. Not so.... and it is humbling to experience needing help during the recovery.
Okay.... I have rambled enough. I am so happy you found a doctor that you trust. That means so much! Are you getting good support from your husband?
I would agree with jhamer in her post to you and would like to add the following: I know it might be tempting to look at the short term result... in fact, I bet your doctor will push you towards the short term result of having the ablation..... but the short term gains (stopping the bleeding) DOES NOT come close to the potential pain you may experience later. Please consider ALL options before moving forward for the short term gain. Good luck with your decision.
Glad you found the help you needed. I remember being that desperate woman looking for someone else who could help me understand this syndrome.... when many doctors could not.
Wishing you all the best with your surgery.
Please keep me posted!
Do NOT get pregnant after ablation.
While reading this post and especially yours I felt like I was sharing the story. I have gone through the exact same thing. Can you please update me on how you are today, I need some kind of hope.