Aa
Hospital
Hi. This is my first time on here. I am 26 years old with 2 children 5 and 8 months. After years of hurrendous periods, endless hospital admissions with severe pain and so unwell, I had my appendix removed 4 weeks ago and they found a large amount of emdametriosis in my pelvis. I am waiting on 6 month treatment of injections and HRT and if that doesn't help they said surgery. I'm in absolute agony tonight and can't control pain but I can't bare going back into hospital again :( Any advice?
My best advice for you would be to get an appointment with an Endometriosis specialist. You have one chance to get this right and done the best way (Minimally invasive Excision surgery) You do not want a regular gyno operating on your or an OBGYN. This disease is a multi organ one and you need to see someone that specializes in this. I can't express this enough.
The difference is night and day
Specialist you get the following
-Excision (Cut out from the root)
-80% pain reduction if not more
-1 surgery should do it but there is no cure for endo so it possibly could grow back
-having other surgeons on hand if there is Endo in other places like the bowels, bladder etc..
-Experience and skill level
With a gyno you get the following
-Laser (removes only the top surface of the disease) leaving the root and allowing it to grow.
-Lack of skill and not ready for complications that can arise like other organ involvement.They will leave the disease behind because it is too complicated for them and you want it all removed.
-Risk of complications during surgery are higher
-No pain relief causing you to have surgery after surgery (I know people who have gone this route and have had over 20 surgeries which is insane)
Please make sure you get all your paperwork from your surgery with your appendix it can help that there is a diagnoses already but not removed so you will be taken more seriously by an Endo surgeon.
I do want you to know that HRT does not slow the grow, stop the growth but sometimes stops the pain. If the disease has not been removed it most likely not help. The is something that doctors usually do instead of surgery which in my opinion isn't right. I would rather have the disease removed first. I am in no way telling you what to do but I would suggest you get on a waiting list with a specialist because there are long wait times to get in to see the ones that are good.
Let me know if you need help finding one.
I don't mean to scare you at all I just need you to know how much false information is out there and even with the doctors we trust. They are not up to date on Endometriosis and some still go by the Sampson theory which is over 100 yrs old.
Message me if you need anymore information I am always here.
The difference is night and day
Specialist you get the following
-Excision (Cut out from the root)
-80% pain reduction if not more
-1 surgery should do it but there is no cure for endo so it possibly could grow back
-having other surgeons on hand if there is Endo in other places like the bowels, bladder etc..
-Experience and skill level
With a gyno you get the following
-Laser (removes only the top surface of the disease) leaving the root and allowing it to grow.
-Lack of skill and not ready for complications that can arise like other organ involvement.They will leave the disease behind because it is too complicated for them and you want it all removed.
-Risk of complications during surgery are higher
-No pain relief causing you to have surgery after surgery (I know people who have gone this route and have had over 20 surgeries which is insane)
Please make sure you get all your paperwork from your surgery with your appendix it can help that there is a diagnoses already but not removed so you will be taken more seriously by an Endo surgeon.
I do want you to know that HRT does not slow the grow, stop the growth but sometimes stops the pain. If the disease has not been removed it most likely not help. The is something that doctors usually do instead of surgery which in my opinion isn't right. I would rather have the disease removed first. I am in no way telling you what to do but I would suggest you get on a waiting list with a specialist because there are long wait times to get in to see the ones that are good.
Let me know if you need help finding one.
I don't mean to scare you at all I just need you to know how much false information is out there and even with the doctors we trust. They are not up to date on Endometriosis and some still go by the Sampson theory which is over 100 yrs old.
Message me if you need anymore information I am always here.
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