Hello Sweetie65! I do not have either of these, but I do have polycystic ovarian syndrome. I'm surprised they've said there's nothing they can do. According to Mayo Clinic there are some things that can be done. :)
From what research I have done, there is a Doc in Germany who has a procedure that will never see the light of day in the U.S. I'd like to see him (when I acquire the means). In the meantime I'll give The Mayo Clinic a call.
Sweetie65, I've had endometreosis and adhesions both, multiple times. My pregnancies helped with the endometreosis some. I've had 3 abdominal surgeries and all three times they've cleaned up the endometreosis and adhesions. My doc said I'm one of the patients who continues to scar easily, and no matter how many times it's cleaned out, it will build back up. Mayo helped my sister who had endometreosis way worse than me. You'll be in my thoughts and prayers because I know this pain very well! 🙏🌼
I have endometriosis but no adhesions because they went in and cleaned it out right away, however, I have growth in places they could not laser without causing too much damage or without risking puncturing or tearing tissue (i.e. my bladder and parts of my intestines, etc...). These hurt like hell when I flare, especially the bladder. I also have interstitial cystitis, which is when the lining of the bladder starts breaking down, so having the added painful growths on my bladder makes it spaz out totally. Makes it feel like an awful bladder infection! I was told at first nothing could be done, but then entered a specific chronic pelvic pain clinic that has both physical therapy and other treatment. My Ob/gyn specialist there is in contact with a Dr. in San Francisco who piloted and started the Chronic Pelvic Pain clinics in the Bay Area and who is an expert/experienced, "agressive," surgeon who she said would be able to work on removal of the more challenging endo material. In short, YES, there are experts out there. You just have to find them. Hoping you are not too discouraged by the ob/gyn naysayers. Go find a pelvic pain Specialty clinic or check out Mayo. I'll do a little research if you want me too, librarian, force of habit to ask, but also pretty good at researching for my own needs. I would be glad to get the information of the Dr. in San Francisco who is basically the guru of everything pelvic pain related. She trained my own specialist who is so fabulous, wonderful, gentle, and knowledgeable I can't imagine someone having more and varied experience that they put her in awe. ☆♡☆♡
Oh my, you have both given me hope. Yes I would love the name of the specialist in SF, I'm 2 hrs away. I forgot to mention that in the first December surgery he accidentally nicked my lower intestine, so now I have 7 lovely scars on my tummy. Warrior scars! 👍🏼😀
Sweetie I will get in touch with my chronic pelvic pain specialist tomorrow and try to get the info on the surgeon in SF. If I remember correctly she's at UCSF. I have Kaiser and they have AMAZING chronic pain programs both for pelvic pain and other more standard pain. I'm followed by both clinics, and it has helped organize my care by giving me a set team of Dr.s, nurses, PT's, etc... unfortunately the only wild card is when I end up in the ER I have no clue who I'll get. I'm just hoping she's not strictly a Kaiser surgeon, but I'm pretty sure she's independent. I am so sorry they nicked your intestines!!! That is the exact risk my surgeon was not willing to take with some of my trickier locations, but from my understanding the specialist surgeon in SF is extremely good at tricky procedures and delicate tissues. That's why my Dr. described her as more "agressive." I have been trying other non surgical treatments first which seem to be working, or they were for a while. I'm flaring at the moment so was just going to try to get into seeing the pelvic pain clinic about options. I'm a bit nervous about surgery though. Don't want my bladder punctured or something!
Thank you winnbliss. I don't blame you about surgery. I've had 14. 4 abdominal surgeries. Good luck with the pain clinic. It's 4:42 am here, I've been since 3 in level 9 pain. Hoping the mess will kick in. Thank you for all your suggestions ladies.
Hello Sweetie65. I am from the UK and have Endometriosis. In both my operations adhesions were found also. 1st operation in 2011 2nd in 2012. I am currently waiting for my 3rd operation with an Endometriosis specialist. I have had many different treatments, hormone treatments, coil, medications, (currently on morphine daily) & pain management.
Hi CJB 19. First of all I'm so sorry you have to endure this. Never in my life have I felt so helpless when the pain "attacks" happen. I have found a pelvic pain team at UCSF in San Francisco, I will give them a call. When the attacks happen I'm completely incapacitated. I take up to 2-3 Norcos and 2-4 ibuprofen and Valium for the spasms. My doc also has given me a Fentanyl patch I keep on hand. Two weeks ago the attack was so bad I went to ER and I was given a morphine shot, Tramadol. I've used the patches a few times. I've been off work since December and afraid I will not be able to return as it is a very physical job. Recently, I have stopped eating after 5pm and I have woken up pain free for 4-5 days now. For now I have a daily reprieve. I miss work, hiking, walking, going places with friends or family because we have to walk long distances. That triggers the attacks also. But...I will not give up hope. There is a doc in Germany who has procedure for adhesions. It's not approved in the U.S. of course.
I too have also had to leave my job. I have been out of work for 2 years. I am in pain every single day. I was on Tranadol daily but it stopped working. So now I'm on a slow release morphine tablet 40mg a day and then extra oral morphine when I need top up. So I can definitely understand how frustrating it is for you. My specialist once told me, adhesion pain alone can be just as bad, if not sometimes worse than endo pain. It's a cruel illness to have as it can flare up so quickly and leave us debilitated. I really hope you get some relief soon or some news from Germany. I've been waiting 11 months for a date for my operation but still haven't had it yet! Can sometimes feel never ending.
I have endometriosis also, and ovarian cysts. But they can't get to any of it due to the adhesions. I don't know what your doc says, but I've been told by 3 OB/GYNs that there is nothing they can do. Very frustrating. Good luck with the operation, I hope it doesn't make it worse. You are in my prayers.
Sweetie65 so sorry I didn't follow up with you about the specialist. I had/am having a major flare on top of a other conditions flaring and a financial crisis. I have only left my house for a job interview and I have another interview tomorrow which will motivate me to move around again, but otherwise the pain has been too overwhelming.
Thank you! I'll need the luck! If this pain doesn't ease up some it will be challenging to focus on other subjects, but I will. It's an afternoon slot too, so I don't have to fight commute traffic right away. Here's to letting my mind have at least a place at the table to discuss all the wonderful qualities I possess without getting shut out by PAIN or WORRY.
Okay, I think I need to join this conversation. Have had pretty much chronic left sided pelvic pain since May. It's much worse while I'm on my cycle(lovely). Gyn said no evidence of an ovarian cyst this time. Last appt he said it could be endo but when I had last laparoscopy, no evidence of any kind of adhesions or anything. Pain seems to have calmed for now. Still waiting for an answer at this point.
Sweetie, I hope so too. Just frustrated that still no answer right now. Have to wait until the 17th for follow up. It feels like there is something going on. I know it's not in my head this time. To be honest, when it's badminton it feels like somebody has a hold on my left ovary and just twisting it. Does that make sense to anybody else?
Amanda, adhesions or no adhesions you can still have tremendous amounts of pelvic pain from endometriosis. Adhesions certainly make it worse for sure and it is a visual sign, but there is so much that happens to the walls, tissues, organs, muscles, mucus, etc... my pelvic pain physical therapist explained it like this to me... the growths inside on our organs, outer uterine walls, bladders, etc... behave exactly the same as the healthy uterine tissue inside, the cells change, and shed, start to bleed...but they have no exit! They are already an irritant and now they are shifting and trying to abandon all those little spaces they hid in, causing swelling and bloating as we bleed internally. Muscles, organs, cellular walls, everything swollen and angry! It's our job to change the pattern of behavior and minimize ways that increase pressure and pain. For instance, sitting for very long times with your legs crossed tightly. This is killer on your pelvic pain. Don't cross your legs, if you have to cross, cross at your ankles and close gently. Try out different types of sitting positions and you'll find out what I mean. Breathing into your diaphragm and really letting your belly relax will also help. Deep breathing is excellent for pelvic pain.
Amanda, yes I know what you mean, not only does it feel like someone is turning and squeezing my ovary, but I feel stabbing pain also. I've had Endo, adenomyosis (uterus removed when I was 39), fibroids, and now ovarian cysts. Yes, push your doc or get a second opinion.
Wynn, thanks for the info. The breathing does help. I have found some really good meditation videos regarding pain on YouTube. I know when I'm in pain, I hold my breath, which causes more pain and anxiety. The videos have helped tremendously. I just had to find the right narrative voice for me.
I was lucky they diagnosed right away and with no adhesions. I had extreme pain but not much growth, just what growth I had was in extremely painful spots, some of which they did not operate on because they were so delicate. I have been supressing my periods since 2009 and that has kept my pain down to a more manageable point. It is starting to creep back up towards really bad though, so I need to explore other options. Have had excellent care through San Francisco Bay area Kaiser though.
Currently Mirena IUD, before that it was lupron but you can't do Lupron for too long. And before that Depo provera but again they limited how long I could go due to bone loss risks. Lupron was the full on menopause. It sucks. Hot flashes everything.
Sweetie as a pain patient you are more likely to hold your breath or breathe faster at 16 breaths per minute instead of the healthier and more relaxed/healing 8-10 breaths per minute the average/healthy breather enjoys.