Hi all
I was diagnosed with endometriosis with endometrioma and adenomyosis in Jan21. My consultant offered excision now or ttc for 6months if unsuccessful then surgery. I initially opted for waiting but now the more i understand i am wondering if my best possibility would be excision? Anyone have any experiences they can share to help?
It will depend on very much on location and severity whether you will have difficulty in conceiving and whether excision would be beneficial.
Everyone's experience will be different.
My story - was TTC 5 years 10 months until I eventually got my diagnosis of endometriosis.
My first lap I had a chemical pregnancy.
My third lap ( this time with an endo surgeon-definitely a turning point) brought us our 21 month old daughter.
Tried again - lost our second daughter at 20 weeks pregnant ( no established cause of death) had chemical pregnancy after losing our daughter and I'm now 5 weeks 2 days hoping this baby will complete our family.
For me the only "issue" wast endo. It grew on POD uteroscaral ligaments and rectum. It made my uterus lining uneven and made my body "think it was pregnant when it wasn't" implantation was the big issue but once properly I was able to conceive naturally.
My last surgery was July 2018 it has lasted long enough for us to have our family but has also eased my hideous symptoms I had with endo. I'm aware it will return but hope I've had my baby by then ( I'm due November) and look at other treatment options.
Can't you go on the waiting list for surgery and keep trying anyways as you never know!
I wish you the best Xx
Thank you! Yes exactly everyone is so different it is impossible to work out what’s best. So sorry to hear about your loss. It’s amazing news you are pregnant now to complete the family <3
Luckily I do have private insurance. But will enquire how long the wait is and hope for the best in the meantime.
I wish you all the best! xx
It really is different for everyone - I had excision surgery and didn’t conceive for 18 months after that... we had already been ttc for over a year before my surgery . Also depends on how sever ur endo is and where it is located...
I had Emergancy surgery in 2019 for a removal of a chocolate cyst no excision of endo. Came off contraceptives and nothing ever happened for us. I had surgery 11 months later my bowel and uterus were adhered together this was preventing us from becoming pregnant! I had a full excision of endo. Following surgery I had no periods no bleeding at all no signs of pregnancy negative tests. Then in November I was told I was 21 weeks pregnant! Our 1st baby is due March 23rd! X
Thank you!
Wow what a journey! I wish you well with the arrival soon xx
Hi there! I’m in exactly the same boat. I was diagnosed in November 2020 during a lap where they removed chocolate cysts and freed my ovaries as they were stuck. I have endo in my pelvic wall.
The surgeon offered me 8 months TTC and then excision surgery. I too opted to try naturally first. This is our 2nd month of trying and I was seriously not prepared for how mentally draining it is. Feels like so much pressure and stress every month when AF is about to arrive. On the other hand it’s also nice knowing that if it doesn’t work out in the next 8 months then we still have the surgery as an option.
Good luck and all the best wishes your
Thank you! Yes I completely agree and relate to those feelings too. I know 6-12months isn’t long to ttc but it’s knowing the endo could be causing a problem which I’m struggling with.Good luck and wish you all the best xx
It sent before I finished writing! Good luck and all the best wishes on your TTC journey!
I had surgery in October and have been told to TTC for 6 months. I had a very large cyst on my left ovary and stage 4 endometriosis and my bowel and womb are fused together. They removed everything they could around my ovaries and womb and unblocked my tubes etc. I’ve got to have an MRI to see the extent of it and then I will need further surgery on my bowel or they have suggested to try IVF. I have a 3 year old daughter and have been trying for a sibling for a long time. I was never aware I even had endo until 6 months ago. I guess the more surgeries you have the more it can leave scar tissue which can affect things. Did they tell you what stage you had? And if tubes and everything were all clear? Hope it all goes well for you xxx
Ur story sounds like mine exactly I to have stage 4 endo and bening trying a baby not happening my tubs are fine and stuff not happening I'm wating list for my endo removel to see if that will help
Good luck with everything. It can be extremely stressful which is not what you want when trying to conceive. Because mine was so extensive my consultant thought that I must have had it a long time. With my 3 year old it took a year and a half and I only fell pregnant when we gave up trying. I hope you don’t have to wait too long for your op! All my tubes were blocked and my consultant said I would’ve had no chance to conceive without the surgery but each persons case is different. I went private in the end as there was 1000 people on the waiting list because of Covid. X
Yes exactly the last thing needed is stress. So much easier said than done. Glad you are getting it looked after now and hope it works out for you too! It’s such a shock and a lot to understand. I had the coil for many years so not sure how long I’ve actually had it either. Best wishes xx
Yes it’s definitely a shock and a lot of information to process. It’s great to be able to share on here and get some advice and chat with people going through similar things. It seems as though quite a few people have been getting an AMH test, so I think I might try and get that done too. Wishing you all the best. I’ve been finding it so hard to think about anything other than what symptoms I’m having but trying to distract myself and keep busy! I really hope everything works out for you xx
Well today I just found.out from the other hospital which I was referred to that they have not even received my referral😢😢😢 this is a joke I'm.so.upeaet over this fact iv had 4 different doctors saying to me they have referred me to endometriosis center and found out after 6 month I have not!! The other hospital has no record of me what can I do.now I'm.so upset I been I'm so much pain and now.i feel as I am.gwtting neglect for my illness
If you’re not going private I would get on the list now. I have suspected RV endo with family history and was told the wait was around 6 months, but surgeries have been halted for Covid so that backlog is probably more like 18 months. They can also do a tube dye test during your lap to check those. We’ve been TTC for 2.5 years and I have never conceived, so we have been offered 1 round of NHS IVF. I simply don’t want to go through any more periods so we’re taking the chance! If unsuccessful we’ll do the lap and then try again naturally. If successful we’ll wait till I’m ready for the lap.
I was TTC for 1 year before excision and now I’m 2 months post excision and still not pregnant. I think waiting depends on factors such as your age and ovarian reserve. I did an AMH test recently and found out I have barely any eggs left, so now I wish I had had the surgery earlier to increase my chance of getting pregnant.Wishing you luck!
Thank you! I have actually booked to have my AMH checked this month to help understand the whole situation. My partner is also getting checked as he has varicocele. Wishing you all the luck and hope it goes well xx
Unfortunately medical science does not have a definite answer. I also felt very awful when given a choice , I wish my doctor make the choice sometimes rather than asking me 😣
My egg reserves are lower after excision even by a top surgeon as the endo were on my ovaries
Conceived thru IVF as not successful before or after surgery
Try checking if you need to add to wait list of surgery I guess ?
Age is a significant factor also , for accuracy you can check FSH or AMH to see if you need to hurry up
Best wishes and good luck!
Yeah
Just to say AMH just one factor. Was given an extremely low chance by RE consultant
Remember she sat me down during treatment saying it did not look good and do you want to continue? Luckily my RE said you never know what would happen, I choose to continue and my son was conceived
Just try to take it one day at a time and not agonizing every decision you made. I was beating myself up for not seeing consultants earlier for endo
Easier said than done
Best wishes for all !
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