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ENDOMETRIOSIS Question #1
I have stage IV Endometriosis and have been TTC for a while.
After my last laparoscopy, my cycle was pretty normal, 28 days, with random bleeding in between periods. The pain has been getting more and more unbearable, the bleeding is becoming more frequent and I have trouble going to the bathroom. Both ways! It is excruciating even when I urinate. My doctor said that it could have spread to my bladder?
I have been doing the Clear Blue Digital ovulation tests like my doctor recommended and the past few months I haven't gotten a smiley face saying there is a hormone surge, it's always been blank, which is frustrating. Am I not ovulating?? (I'm still have my period though)
It's been almost nine months since they scraped away a lot of the tissue in the laparoscopy, and my cycles are getting longer and longer. In January, I was 4 days late, in February, I was a week late and now I am a week and a half late, but no BFP?! Which is torture when you WANT to be late...Did this happen to anybody else?
I feel like my body is betraying me! It is getting difficult to figure out when I am ovulating when I'm not getting the hormone surge AND my cycle is getting longer.
Any advice?? Please let me know!
After my last laparoscopy, my cycle was pretty normal, 28 days, with random bleeding in between periods. The pain has been getting more and more unbearable, the bleeding is becoming more frequent and I have trouble going to the bathroom. Both ways! It is excruciating even when I urinate. My doctor said that it could have spread to my bladder?
I have been doing the Clear Blue Digital ovulation tests like my doctor recommended and the past few months I haven't gotten a smiley face saying there is a hormone surge, it's always been blank, which is frustrating. Am I not ovulating?? (I'm still have my period though)
It's been almost nine months since they scraped away a lot of the tissue in the laparoscopy, and my cycles are getting longer and longer. In January, I was 4 days late, in February, I was a week late and now I am a week and a half late, but no BFP?! Which is torture when you WANT to be late...Did this happen to anybody else?
I feel like my body is betraying me! It is getting difficult to figure out when I am ovulating when I'm not getting the hormone surge AND my cycle is getting longer.
Any advice?? Please let me know!
I am in the same boat you are. Endo, mainly around my ovary and a couple other small spots and I rarely get positive OPKs. I've conceived twice, miscarried both but I had IUIs done and I was monitored. I've had a few pos OPKs but that's it. I will go day18, day 19 and still no surge and it is frustrating. Cervical mucus is not consistent either. I've used several brands of opks too. So I went to my fertility doc first time in a while yesterday and I am CD 16 now. He could not tell if I had a ruptured follicle or a cyst and that surprises me. I complained about the fact I don't think I'm ovulating but getting periods every month. Two gyns said if I'm getting periods I'm ovulating, fertility dr isn't so sure. I asked him about relation between endo and ovulation and I told him, there had to be something goofy going on. I had blood drawn yesterday, nurse called me with results- progesterone is 2.3 and he wants me to retest Tuesday. Ok so did I ovulate or not??? Doc really isn't sure and he is the second fertility dr I've seen the last 3 yrs and seems to be one of the better ones but it annoys the hell out of me that no one really knows if I'm ovulating. My lining was a little thin yesterday and I'm crampy but not sure if this is ovulation pains or endo flaring up! Dr says we can't rely on OPKs now and I'm like, no kidding but I have no fertility coverage and it's expensive being monitored. I had a lap done in Dec and last lap I had, I got preg twice so I'm hoping within the next few months that something happens as my clock is ticking bad and I'm running out of time. But I am single and using a male partner to conceive and endo, neg OPKs really make it hard. I can't temp, basal temp is all over the place and I can't look at my cervix, yuck and too difficult. I hate this I swear! Sorry for the rant.
Just want to make it clear about these studies and meds. There is one out there that is pushing a drug which is like Lupron. I just want to make sure everyone educates themselves before taking part in these studies..
You are so welcome that is why I do what I do because I know what it feels like to not know anything about it and feel alone. I have suffered for 23 yrs and 14 yrs of that was undiagnosed and these women know what you are going through. I let them know what you said and if you are interested I can help you find some support on twitter or Facebook. A lot of Endosisters out there.
I find twitter better as I am not much of the catty group kind of person but everyone is different and I can lead you to the groups that can help the most as well as links to websites.
I am not sure if that doctor is a he or she to be honest but rave reviews regardless :)
I find twitter better as I am not much of the catty group kind of person but everyone is different and I can lead you to the groups that can help the most as well as links to websites.
I am not sure if that doctor is a he or she to be honest but rave reviews regardless :)
I can't even begin with where to start about thanking you and the women that you asked about my situation. You are a sweetheart!
I am in the process of looking into Dr. Dulemba to see what he can do.
It seems that thought my doctor has been really kind and more helpful than my first doctor (who was a joke and told me I needed a hysterectomy), I have the feeling my case is just more than what her experience can handle.
Thank you (and your friends/endosisters). I was really anxious about reaching out for support/advice, but so far I am glad to have found this forum.
I am in the process of looking into Dr. Dulemba to see what he can do.
It seems that thought my doctor has been really kind and more helpful than my first doctor (who was a joke and told me I needed a hysterectomy), I have the feeling my case is just more than what her experience can handle.
Thank you (and your friends/endosisters). I was really anxious about reaching out for support/advice, but so far I am glad to have found this forum.
Oops... Stupid iPhone lol..
Cont.... I will cut and paste their responses and I will find you a good surgeon in your area. Just give me until later today if that's okay.
Cont.... I will cut and paste their responses and I will find you a good surgeon in your area. Just give me until later today if that's okay.
I have lots of information but I can't get on my computer until later so I will cut and paste
Hello,
Thank you for you kind welcome! This is my first time reaching out for support from anyone other than my husband and doctor, so I appreciate your words!
I live in the DFW, Texas area. Maybe that will help with the kind of Doctor that you are suggesting.
Please let me know what you hear about my symptoms.
Thanks again!
Thank you for you kind welcome! This is my first time reaching out for support from anyone other than my husband and doctor, so I appreciate your words!
I live in the DFW, Texas area. Maybe that will help with the kind of Doctor that you are suggesting.
Please let me know what you hear about my symptoms.
Thanks again!
While I wait for their responses I do need to tell you what I tell everyone that comes here. You need excision surgery (Cut out) if you do not have this surgery done by a top Endometriosis surgeon it will make it worse for you and the outcome of your fertility. I had stage IV and I did conceive and so have many others however there are some that they didn't as well because everyone is different. Endo doesn't discriminate.
Let me know where you live and I can try to help you find the best fertility Endo specialist where you live. There are only a handful of surgeons worldwide for Endometriosis for 200 million women suffering and most don't realize if you just scrap the Endo its not getting the root of the disease and some surgeons (gyno's/OBGYN's) don't have the tools or skill/education to operate on endometriosis this is a must!!
Let me know where you live and I can try to help you find the best fertility Endo specialist where you live. There are only a handful of surgeons worldwide for Endometriosis for 200 million women suffering and most don't realize if you just scrap the Endo its not getting the root of the disease and some surgeons (gyno's/OBGYN's) don't have the tools or skill/education to operate on endometriosis this is a must!!
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1) Scraping the Endo won't help. You know excision is her best option. I'm sorry I didn't have an excision before IVF the first time. I believe the hormones made the pain more intense. The heartbreak is the worst. Especially to become pregnant twice and then lose out on a child.
Since she is already in so much pain, I believe she needs excision over pregnancy anyway is her gynecologist telling her what mine did? Get pregnant and Endo will go away? Endo doesn't go away without excision. Endo can cause miscarriages too. Oh give her hugs from me! It's so heartbreaking.
2) I wish I could give advice. I haven't had issues ovulating and my periods have gotten shorter. I have a luteal phase problem. She needs to see a reproductive endocrinologist at a fertility clinic. He can help her find out if she's ovulating and also address her endo issues which should be addressed again before ttc as she's in so much pain. I'm afraid if she conceived she may lose the baby because of the pain issues or a tubal preg. See a fertility dr! Best advice.
3) Are her tubes blocked? Hysterosalpindogram to test it. Yes i would try an endocrinologist also if hormones are a suspect.
4) may not be ovulating. I wasn't. However, avoid clomid! It dramatically flared my endo! There are better options. I'm doing NaPro, recommended by my excision specialist, to avoid stim drugs. I'm being treated for ovulatory dysfunction and luteal phase defect. I got pregnant after excision and starting NaPro, but miscarried at 6 weeks. I am also stage IV, history of endometriomas and blocked tubes.
5) I have a blocked tube & low egg reserve. Melanie is right, the best decision for her is excision. With my blocked tube, I put myself and baby at serious risk for an ectopic pregnancy. Your friend needs surgery before becoming pregnant
6) Heather is right too. I'm on hold right now because of fluid in my tube, possible my pregnancy tissue, and can't try again until it is removed surgically.
I also have someone that wants to add some info but she said she would get back to me soon.
Hope some of that helps. Also below is one of the best and I have heard rave reviews from many Endosisters on Social media.
Dr. John Dulemba
The Womens Centre,
3321 Unicorn Lake Blvd,
Suite 100,
Denton, TX 76210
T: (940) 387 6248
*Dr. Dulemba is part human, part robot.... he is the Robodoc!
Specialisation: GYN only
Bowl/urinary tract surgery: Does some of own bowel and urinary tract work. Segmental bowel resections are conducted by an assisting colorectal surgeon.