Health anxiety :endometriosis

[Afrohair]

Hello I’ve got a condition called endometriosis but I’m not diagnosed yet !it might sound silly putting this on here that I have something but not been diagnosed but literature says it can take up to 7 years for an average diagnosis so basically I already know I have this all my symptoms match but I have to convince the doctors and go through a lot of protocols on the nhs before I can get my diagnosis and operation this has led me to be very anxious I’ve had to go out my way to look for a specialist because the nhs won’t refer me yet and have to keep singling other conditions out the problem I’m having is the wait for the appointment my appointment is on the 27th of this month and I’m finding myself on google all the time my current gynaecologist told me to go on the pill to try and fix it but my symptoms are getting worse and I’m thinking to stop the pill I keep googling for answers to stop or not I don’t know what to do while I’m waiting to see a specialist then I’m worried if he refers me I could be waiting a year for an operation I’m so stressed thinking of ways to make money to pay for the operation my self but right now I’m off work sick and I’m thinking I might have to loan the money but problem is the disease can grow back I’m in a terrible state of mind with it all my partner really wants me to wait but it could affect my fertility I’m so stressed

[mockingbird4]

I recently had Endometrial Ablation done, they cant fully diagnose you without going in with a camera to see how the endometriosis. My GYN assumed I had it because I was in so much pain and ttc for a year with no luck, so, he did exploratory surgery and found endometriosis ALL OVER from my uterus, ovaries, bladder, to my rectum. He said I had the worst case he has ever seen and I had it for years and years. I spent 6 years on birth control, and I personally think the pill is what made my endometriosis so bad, or caused it in general. You should really find a new GYN, one that will listen to you and take care of you. That stuff is painful and no joke at all. And removing it helps with fertility and if theres any left that they couldnt get, pregnancy hormones would kill the remaining endometriosis if you were to get pregnant.

[Afrohair in reply to mockingbird4]

Thanks for your reply I really think the pill has made it worse I’ve found a specialist but I won’t see him until the 27th and I’m so anxious waiting I believe soon I will be in good hands but it’s affecting my bowl now!and I don’t know where I’m going to get the money for surgery once I’ve spoken with the specialist other than paying monthly if approved or family loan.the current gynaecologist won’t refer me to a specialist just gives me pills I’m going to try and tell him I’m not taking the pills and I need to be seen properly but he keeps ignoring my request and saying I should go and pay for that treatment private which I’ve paid to see someone but it’s the expense for complicated surgery as I think I have rv endo I feel like I can’t wait any longer I already lost my baby 3 months ago at 12 week

[mockingbird4 in reply to Afrohair]

I am so sorry to hear that, that is absolutely heartbreaking. I pray for the best for you. I hope this new doctor will listen to you and give you the best help. It is quite expensive, even with insurance, i paid over a grand out of pocket before mine was done. I hope you get some kind of assistance, even look into care credit.

[Hidden in reply to Afrohair]

So very sorry for the loss of your baby, my heart goes out to you.

Something to take note of - mockingbird mentioned endometrial ablation. This procedure does NOT promote fertility. The lining of the uterus is essentially burned away.

When a woman undergoes an ablation a permanent form of birth control must be implemented.

[Hidden in reply to mockingbird4]

Keep in mind that an endometrial ablation is NOT beneficial for fertility, it’s actually quite the opposite. An ablation thins the lining of the uterus to the point of not being able to carry a pregnancy safely. When a woman undergoes an ablation she must implement a permanent form of birth control because pregnancy would be a danger.

I had an ablation done in 2004 during which I also underwent the Essure procedure. Spring coils were inserted into my Fallopian tubes to cause build up of scar tissue to prevent pregnancy.

[mockingbird4 in reply to Hidden]

How weird, every doctor that I have been to has recommended the surgery to increase my chances of pregnancy. Which has been 3 different GYNs before I had the laparoscopic procedure done. I believe they have very different techniques these days because all 3 of them indicated that it would help me get pregnant and never told me anything about pregnancy being harmful after the ablation. But in truth, every ones body is different and I pray that I get pregnant.

[Hidden in reply to mockingbird4]

Your doctors did you a HUGE disservice. An ablation is NOT for women who plan to become pregnant.

You do NOT WANT to get pregnant after an ablation.

Future fertility

Pregnancy can occur after endometrial ablation. However, these pregnancies might be higher risk to mother and baby. The pregnancy might end in miscarriage because the lining of the uterus has been damaged, or the pregnancy might occur in the fallopian tubes or cervix instead of the uterus (ectopic pregnancy).

Some types of sterilization procedures can be done at the time of endometrial ablation. If you are having endometrial ablation, long-lasting contraception or sterilization is recommended to prevent pregnancy.

[Hidden in reply to mockingbird4]

I’m sorry that your doctors essentially lied to you. Everyone’s body is different, yes, but an ablation is an ablation, and after one NOBODY should attempt to become pregnant because the pregnancy would not be viable. It angers me that your doctors misspoke the truth.

[Hidden in reply to mockingbird4]

m.acog.org/Patients/FAQs/En...

[mockingbird4 in reply to Hidden]

Thank you for all of that information. However, I had a very minimally invasive procedure done that did not require them to insert into my uterus and according to the procedure that I had done - the research ive done on it as well prior to surgery states that...

"For those with stage I-II, the chances of conceiving after excision is between 80-85%, almost the same rate as if you did not have endometriosis. Those with stage III will have a 70-75% chance of conceiving and those with stage IV is between 50-60%. In experienced hands, Laparoscopic Excision can result in long-term symptomatic relief, improvement of pregnancy rates "

I had laparoscopic done which is what was recommended for me to get rid of not only endometriosis but cysts as well and help with my fertility. Maybe we are speaking on two totally different things, and I do appreciate all of your advice. However, I am going to stick with my doctors opinion and take my chances on trying to conceive!

[Hidden in reply to mockingbird4]

I’m thinking that you definitely didn’t have an endometrial ablation done then. An ablation isn’t done via laparoscopy, so we are most definitely speaking of different procedures. There is no excision to be done in an ablation.

I’m relieved to know that you didn’t undergo an ablation and do hope that you eventually find yourself pregnant one day! Best wishes to you!

[mockingbird4 in reply to Hidden]

I am definitely thinking so too, I have 3 incision scars from my procedure and it was done through my belly button. Wow, I am glad to know that we totally are speaking on two different topics!

Thank you so so much, and I am truly sorry to hear that you had to go through that horrible ablation.

[Hidden in reply to mockingbird4]

Yes, definitely two different procedures! My niece had endometriosis years ago and had laparoscopic surgery to remove tissue. I knew that when you mentioned endometriosis and laparoscopic surgery you weren’t speaking of ablation, it didn’t make sense to me.

Thank you, it’s ok. I had horribly heavy periods and painful cramps for many years prior to having my children, then back to heavy periods after. I also had a history of uterine fibroids which had been removed a few times via hysteroscopy. In 2004 I decided to go ahead with the ablation, which definitely lightened my periods, making them more manageable.

Even though we were not having anymore children (we have 2) I did go through a bit of a grieving process over the loss of fertility, I admit. But even my ob/gyn at the time said that having another baby wouldn’t exactly be feasible due to my having extremely severe postpartum depression after the birth of my 2nd. Additionally, I had very complicated pregnancies with both my son and daughter, and it wouldn’t have been ideal to experience that again.

[Afrohair in reply to Hidden]

I think there may be two types of ablation one for sensitive areas like the bowl it seemingly shaves the surface and an endometrial ablation which you can’t get pregnant after this is true I would not want that type x