This story comes from Bobbi who developed such severe scarring from endometriosis that her surgeon could not remove the disease and she also developed anaemia due to heavy bleeding
This is Bobbi’s story …..
I've been anticipating a time where I could sit down and respond to all of your experiences with endometriosis. What some of you have gone through is quite similar to what I have gone through and continue to go through, and it is extremely difficult to find someone who truly understands me and my struggles on a daily basis.
My name is Bobbi. I am 33 years old, married and have a 3 year old little boy. I have had "female" problems since the age of 12... From irregular periods, to painful, heavy periods, to a scare of cervical cancer, infertility, PCOS, and endometriosis.
I was blessed with having my son after seeing a fertility specialist and taking fertility hormones - at that time in my life I was told I just didn't ovulate. I had a high risk pregnancy, but after an emergency c-section, my son was born healthy and that's all I had prayed for.
Once my son had turned one, we decided to try for another baby, however we weren't so fortunate... (However, I was told there might be hope with the help of IVF)... I began having significant cramps - and I describe it as labor contractions in my lower back, and it is as though I am delivering a child vaginally. The symptoms vary in intensity from day to day, but it became debilitating and not to mention I became quite depressed. (I was already depressed due to my infertility issue).
I had been in the emergency room due to heavy bleeding that had gone on for over 3 weeks. The doctor said I was anaemic, to take iron pills and to begin taking agestyn to stop the bleeding.
Well, the agestyn didn't help, it may have lessened the bleeding a little, but once the 14 day script was gone, the heavy bleeding began all over again - this went on for 44 days... I was in and out of the E.R., I was going to or calling my family doctor repeatedly (my OBGYN was on a 3 month LOA).
It wasn't until I was at work (I am a nurse) and had nearly passed out in the bathroom, then transported by ambulance to the hospital that I was finally seen by another OBGYN - who immediately said I needed to have surgery... she performed laparoscopy and then told my husband afterwards that my insides were one of the worse she's seen and that she would discuss any chances of pregnancy at my post-op visit in 2 weeks...
I woke up from surgery and my husband was in total dismay because NOTHING had been done due to the severe scarring that effects every organ in my abdominal region...
So in the meantime I am in so much pain, bleeding still (although not as heavy) and unable to work or even lift my 3 year old son! I cry all the time and finally my parents had enough of seeing me like this they contacted my doctor and told them I need to be seen. The OBGYN saw me that day and told me there was NOTHING she could do because of the severe scarring - that she suggests a hysterectomy.
I told her I hope to have more children - and she said all she could do then was to manage my symptoms with Narcotics and anti-inflammatory, and if my bleeding becomes heavy to prescribe meds for that... so that is where I am today - I do have an appointment with a specialist out of state to discuss IVF and at that time I will discuss if there is anything that can be done further to ease the pain/bleeding. The appointment isn't until the 3rd week of January and I just hope that I can last that long.
I did contact my family doctor and requested an anti-depressant - because this has been hell for me and I feel so alone without anyone to understand what it's been like
I thank you all for sharing your experience with all of us who suffer from this - it is comforting to know that there are other people out there who can acknowledge your thoughts and feelings - because sometimes I feel as though I'm going out of my mind... Although I would not wish this on anyone - I am grateful to have found your stories!