Stage 4 & Fertility

[Possibleendo2022]

Provided this as an update on my previous post however also adding a new post for traffic as have some new questions.

I wanted to update for anyone here who may be going through something similar but also as I am once again looking for advice from anyone who may also have gone through this. Thank you to anyone who responded the last time.

It has now been confirmed as stage 4 deep infiltrating endometriosis with my entire rectovaginal area impacted. I am awaiting a surgery date however also need to meet with the colorectal team to understand what they will be doing with my bowel as it will be a multi disciplinary surgical team involved.

They now want to put me on zoladex prior to the surgery. I presume this is normal protocol?

I am 41, I have never been pregnant and I am concerned about how this may impact my chances of having a family in the future.

I am struggling with anger as I was diagnosed with 2022 with stage 3 (no excision at all in this laparoscopy) and told to present with pregnancy in 6 months or refer for surgical management. And now it’s 2 and a half years later, I am 2 and an half years older and it only seems to be urgent for them now. I was discharged back then and believe I should have been kept under monitoring due to my staging, age and fertility.

Would like to hear about anyone’s experience with zoladex and then subsequent fertility, recovery times for a surgery like this and also in making a complaint about my discharge from care in 2022.

Thank you!

[Pelvic_pain]

Zoladex is effective for some and not for others do you won't know how it us for you until you tried. For me it was a dream as I felt uncomfortable after taking it but other than 1 very painful period after the first injection, I have no more excruciating pain. My surgeon has wanted me to take it in the run up to surgery to bring down inflammation so that he could see better when operating.

[Possibleendo2022 in reply to Pelvic_pain]

Thanks for replying!

My understanding at the moment is that they want me on 3 months of injections prior to surgery. I have asked how long it will take for my body to go back to normal (fertility wise) afterwards and they have said up to 6 months.

My concern is that they just want me on the injections to make the surgery easier for them with no thought about the fertility questions I have, eg if surgery is delayed due to cancellations etc it could be over a year before IVF is even attempted and I am only getting older.

[Pelvic_pain in reply to Possibleendo2022]

It is so hard to get the right balance & 1 thing may work for you but not another so you need to do what feels right for you. Some may say a better surgery outcome (so whatever you can do to make surgery easier/better) may help your fertility chances as well. Others may be much more concerned with being ready for fertility treatment as soon as possible. Sadly there is no right or wrong answer as it is so personal to each person, especially when battling with so much pain. I would advise writing gown all your questions and asking your doctor everything you can think of to help you decide what is right for you

[Possibleendo2022 in reply to Pelvic_pain]

Thanks so much for responding x

[h0lli3]

Also stage 4, with rectovaginal involvement and about 2 months post op. I wasn't offered zolodex before the surgery but was given triptorelin (basically the same thing) with add back tibolone afterwards. Wish I had it, or zolodex, sooner. I was very inflamed during the surgery which made recovery harder and longer, but since then the only issue I have is hot flushes and all other endo symptoms have so far gone.

Also ttc and going through ivf as my tubes are damaged due to the endo and inflammation being left too long (should have had the surgery 2 years ago). With ivf, they can give you other meds to go straight from zolodex to ovulation stimulation. You should have an AMH blood test before the multidisciplinary meeting and that will help you and the drs decide best action for you, as it will indicate your ovarian reserve. I tried to freeze eggs before surgery but the endo was too bad that they couldnt access any but it did really help speaking to the fertility dr, as I understood more what could be possible for future.

One thing to be aware of which I wasn't, if your tubes are blocked, damaged or inflamed and it caused fluid to build up, they need to be removed before ivf, otherwise the fluid is toxic and will likely kill an embryo. Same if you conceive naturally, it's called hydrosalpinx and is common with endo apparently- hadn't even heard about it until the day of surgery so I declined removal until I knew my options but now have to have another surgery to get them removed.

You might find it useful to also join the fertility forum.

[Possibleendo2022 in reply to h0lli3]

Hey, really appreciate your reply.

My clinical nurse has said without the zoladex the surgery will be more difficult due to the inflammation so it’s nice to hear it also said from someone who has gone through it, although I’m sorry you’ve had to go through it at all.

I have had my AMH and am awaiting the results at the moment. I am unsure about whether to have a fertility appointment before my next gynae appointment. I have had an appointment through for early December and they want to start the zoladex then and do the procedure at some point early next year. In an ideal world I would get the procedure and recovery done before the fertility aspect but I don’t really know enough about it all to know if this is right or not. I guess once I have the AMH results I’ll have a better idea. I don’t want to just spend money on fertility treatment chasing a dream that may be pointless.

I had never heard about hydrosalpinx before at all! Can’t believe it was only mentioned to you just before surgery! How complex did your surgery end up being in the end (I know sometimes they don’t know until you are in there) and how has your recovery been? Have you been given the ok to start fertility wise so soon after the surgery as that’s quite a concern for me that I may have to wait 6 months? X

[h0lli3 in reply to Possibleendo2022]

The surgery was about 5 hours with 2 days in hospital after. They knew I was fertility conscious so I was either coming out with drained endometriomas to preserve ovary or removed endometriomas if they were coming away from the ovary without too much damage - thankfully all 4 endometriomas are fully removed as well as a bowel nodule removed and all the organs untethered from one another with bowel put back where it should be, without a stoma bag. I had about 2.5 months off work to recover and so far so good, just some unexplained bleeding. I was up and about by week 3. We have more fertility tests next week so don't know timings yet.

I found the fertility doctors could give a realistic plan, not only for what to ask for/ expect from surgery but also what I needed to be ready to explore ivf (weight goal, surgery, tube test, blood tests during cycle). It also highlighted deficiencies in my blood work that needed to be rectified which took months to get levels up.

[Possibleendo2022 in reply to h0lli3]

So pleased for you that not only did the procedure go well (in relation to fertility preservation) but also your recovery has been ok. It’s so hard to imagine myself out of action for such a long time but I suppose with any recovery rest is key.

I have had my AMH results back and they weren’t good, <0.2. I know AMH isn’t everything but having a figure that low really has been difficult. I’m going to take on board your view that the fertility doctors are the best ones to help with a realistic view and we are going to try to get a consultation and also a follicle scan (it’s too early and can’t remember the name) and some advise before I have my next endo appointment about the zoladex.

I spent my 20s on the pill trying to avoid pregnancy and now here I am at 42 trying to navigate this. It’s really draining, physically and emotionally. Really hoping your fertility plans work out for you x

[h0lli3]

healthunlocked.com/fertilit...

[Cris_SC]

I have been given Zoladex also to control the pain and make things easier during the surgery. To me it is helping massively with the pain, so I would recommended it for that. I understand we all have different situations so just giving you my little feedback with Zoladex, hope it helps. All the best with the surgery and the recovery.

[Possibleendo2022 in reply to Cris_SC]

Thanks so much for this x