Endometriosis UK
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Fertility plan after surgery with stage 4 endometriosis

Hi I'm, 33years old, I have suffered with serve pain from endo for 18years. But finally after 4 years of failing to get pregnant I'm finally at fertility clinics getting treatment. Currently diagnosed with 6cm chocolate cyst, the bowel, bladderand vagina show endo growths,and deep pelvic endo 1cm deep, pelvic fluid, and womb thickening, also womb pulled to the right and retroverted. endo Surgery planned To go ahead in next few months then IVF. A further referral is made to specialist clinic but will be 2years away to treat endo in other organs..... I will never be able to afford ivf privately so I really want to make the most of my only chance. I'm trying to Do a lot of research Beforehand.

My hope/thoughts:

The Dr will excise as much as he can and abalate what is around bowel, remove cysts and try to place womb back to correct position.

Im considering asking for d&c and Tubical irrigation during surgery then at least 60 days of GnRHa

Anyone any thoughts or recommend any treatments or believe anything else I could do to help the ivf be successful.

I've tried to keep this as short as possible, but still a bit long wind...

Thank u xx

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Hi, only just come across your post. I can't really offer any advice but I'm in a similar situation: 32years old, ttc for 3 years and have recently been diagnosed with endo and bilateral chocolate cysts. Been told I need to have a lap before receiving any fertility treatment but waitlist seems so long. Would also love any advice. Hope you are coping well, I have my good and bad days.

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Hi S-joy,

I'm in N. Ireland, if you are looking for surgeon that will excise over here you will wait 14months!! It's terrible, every month I'm getting worse and worse.

Where ru from?

I'm going private now, I don't think I'm going to get the best possible surgery compared to waiting and going to a bsge center, but I feel like times not on my side with regards to fertility and every month my insides are being destroyed a little bit more. I'll post again just b4 and after surgery and keep you updated.

I've started Prostap injections, I didn't want to as I've read reviews that it reduces growths which can effect the results of surgery i.e. Make small bits tiny and then surgeon may not removed it all.

But other info had said taking Prostap straight after surgery is very difficult coping with recovery and then adding the side effects of Prostap on top of that.

The reason I'm going for Prostap is it significantly reduces your inflammation levels caused by the endo, inflammation is a big part of the infertility problems with endo.

The Prostap/GnRHa side effects are horrendous, but 3 weeks in and I'm starting to manage better, but still not feeling good!

Can I ask if you've had a ca125, and if you've had your inflammation markers checked?

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Hi Plbakker95,

I'm based in Belfast and completely ill-advised about this condition. I went for a routine scan at the fertility clinic at the start of Feb 2017 and was told there was a dark mass on one of my ovaries and they didn't think it was endo but they would refer me for an MRI. Told me the wait was 9-10 months. After discussing costs, we decided to go private for the scan to speed things up and had a MRI scan 2nd week of March - after a month of chasing a referral from the clinic (added and unnecessary stress). I should note, however, the NHS have since offered an MRI for 25 April 17 - so for anyone who is waiting for a scan, the wait was much shorter than I was told - if I had known, I wouldn't have paid privately but what is done is done now!.

The results were sent to my GP (as I couldn't get a referral from the fertility clinic as they don't return phone calls), however, the GP 'misplaced / never received' the first lot of results so I had to get the private clinic to resend them. My GP then told me the results over the phone but said he couldn't give me anymore details and I'd need to go back to the fertility clinic. I returned to the clinic 2 weeks ago to be told my GP didn't upload my results or send on my report so they couldn't offer any advise and I'd need to chase up the report and come back in 3 weeks (which will be next week). My husband went down to the GP surgery and they handed him the report with no explanation, therefore I have had to rely on google and these forums for any assistance. The only info my consultant said was that I'd likely need a lap and the wait shouldn't be longer than 3 months but she wouldn't put me on a waitlist until she had my results (understandably). However, I doubt that her 'estimate or guess' for the waiting time is anywhere close to accurate having read a lot on these forums.

I had never heard of a Prostap or if I have had a ca125 - what is this?

I know they said my prolactin (before Christmas was high on 3 different blood tests) and I had an MRI done on my pituitary gland which came back clear.

So all in all, I'm pretty lost and confused. Any questions you think I should ask my doctor next week would be so helpful. I will make a list.

S-Joys

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Whilst surgeon is in there, make sure they check your Fallopian tubes are clear by running dye through them.

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Awh I Jst typed a hugh reply and lost it!!

Ur story is a clone of mine. Phone your surgerns secretary they are most likely based at the mater hospital, I'm with RVH fertility clinic at grove center. I was Told 3months for lap as well I called his secretary told 10mths, my worry is fertility dr is not endo specialist and won't cut it all away, most people are back needing surgery in 6 mths! I went private to endo specialist his NHS waiting list is 14mths

Go to 'Nancy's nook' on fb and read the pinned post lots of good info.

There is a endo group meeting at. The city hospital tonight at 8pm wing e, outpatience if u want to go I'll be there. It's my first time but I believe consultant speaclist go and give talks to the ladies x

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Our stories so seem so similar. Thanks for replying, I feel I am slowly panicking on my own most of the time.

Is this group at the City tonight a recurring event? Do you have to be invited? I can't make it tonight as have plans I can't get out of but would definitely be interested in going in future as be great to get to meet others who have some understanding of everything.

Thanks for the advice about Nancy's Nook as well. I have just sent a request to be added to the group.

I've got another appointment at the Grove next week so will be taking a note of all your questions then hopefully look at deciding on best course of action. Are the Grove the ones who give you the private referral?

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Hi lovely I had excision surgery December 2015 and did ivf the following summer. My surgeon was amazing, his recommendation was to drain the endometriomas rather than excise them, as this could cause scarring/damage to the ovary and reduce the responsiveness of them to the ivf stim drugs (an MRI showed I had one on each ovary). When he got in there though I didn't have any! But did have lots of adhesions and bowel and ureter problems so the surgery took 5.5 hours! I asked him to check the right tube was still working ok (tubal patency test think it's called?) as I had the left one removed December 2014. When it came to doing the ivf they could only get the eggs from the right ovary as there was too much scar tissue on the left side xxxx

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Hi, do you mind me asking if you were successful with the ivf? I have endo and had surgery to remove it from my left ovary as well as a few other places (my surgery was also 5.5hrs) I'm concerned they won't be able to get any eggs from the left like you due to scar tissue and worried about the pain of any attempts. Did they try on the left and was it painful? x

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We got pregnant with our fresh transfer but miscarried about 5.5 weeks, we've just done a frozen embryo transfer and I'm now about 6 weeks pregnant 😊 You get sedated for the egg collection so you don't feel anything, I actually fell asleep! They got 9 eggs from my right side and tried to get the left side by manipulating my tummy but couldn't get them. She said they could have gone through the uterus to get them but as they did well from the right side they didn't want to risk any damage. I was sore afterwards for a few days which is normal, and had extra pain on the left when the eggs they hadn't collected started coming away on their own, nothing a hot water bottle and paracetamol couldn't sort though xxx

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Thanks so much for your reply, you have given me hope 🙂 If you don't mind me asking how old are you? xx

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You're welcome 😊 I am 30 xxx

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Everything just seems to take so long.

I had my first laparoscopy in 2010. I was advised it was stage 3 endo. It was lasered by a general gyne and removed from Utero vesical pouch, left pelvic side wall, left uterosacral ligament, right ovary.

After TTC for 6 months, got referred back to the gyne who did another laparoscopy in 2013, they said there was some recurrent, but not as bad as previous- Utero vesical pouch, right pelvic side wall, uterosacral ligaments, left ovary.

We started IVF in December 2014.

Have had 2 fresh and one frozen cycles on NHS with two miscarriages and 1 private round.

Have they done a amh test for you?

Mine was low for my age and the consultant said he'd expect those results after the surgeries. Might be interesting to see if it changes after your surgery.

Ask them about doing an endometrial scratch for you and anything else that might increase your chance naturally after the op.

I'm wondering about being referred for another op with a bsge centre before we do any more treatment....

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A lot of ppl have told me to go to bsge center and get it done right, I suppose we risk scarring etc from all the 1/2 finish procedures.

Have you taken Prostap/lupron type medication?

Is the endometrial scratch similar to d&c

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I'm not convinced that all my endo was removed from my previous ops and I can tell it's flaring up again.

I haven't been given any meds as yet. My IVF consultant said that IVF bypasses endo!

Yeah the scratch is like a d&c

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I was told until I had my endo sorted, I couldn't have any further fertility treatment. Did you have any treatment for your endo prior to ivf to help with fertility or to help with endo pain etc?

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After 6 months of TTC, got referred back to gyne. He suggested blood tests and then the laparoscopy to check for endo. After x amount of recovery months he then put me on clomid for 6 cycles! After that didn't work, we then started the pre IVF checks and tests...

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City have a group meeting every month. if you join 'endometriosis support ni' on fb they post when the meeting is.

I went directly to 352/ kingsbridge on the Lisburn road for MRI and asked for my report to be emailed to me. I had to chase it up but I got it within the week x

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Did you find the meeting last night useful? Thinking I might try to pop along in future.

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We had a sudden death in the family that day, I didn't get but hope to get next month :0)

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Oh i'm so sorry to hear that, my heart goes out to you and the family in a difficult time. Thank you for your advice and answers on this forum. X

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ENDO SUPPORT N.I. GROUP MEETING TOMORROW NIGHT

THURSDAY 25TH MAY @ 8 PM

WING E, OUTPATIENT'S DEPARTMENT

CITY HOSPITAL Belfast

Xx

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Check out natural fertility info.com they are fantastic and have helped me a ton w/ diet suggestions and supplements specifically for Endometriosis God Bless you !

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Hi I have only just come across your post.... Just wondering how everything turned out for you? Am based in donegal but am thinking of going to Belfast for treatment.... Recently been told that I have less than 5% chance of ivf working and that donor egg if my best/possibly only option. My new consultant (last guy was useless and wasted an entire year of my life sitting on blood results he finally had to admit he didn't know the sufficiene of! My amh was 2... He didn't know what this meant!!) new guy is amazing and a straight shooter...at 38 I can't afford for someone to be filling me full of pipe dreams n miracle stories...but he's linked to a private clinic in Belfast..where they send you to Spain for donor egg treatment...I am waiting another lap which is to be down in Coombe hospital in Dublin with one of top endo surgons... So I will just have to take things from there... But I had a lap last Aug..same as I don't think she actually removed endo just drained it cos it's back so quickly..I took prostap after that lap for 3 mts n she expected me to fall pregnant myself within 6mts (warmed me endo would b back by then) but my periods never returned within those 6mts prostap had messed with my system so much.. I think I will opted not to take anything this time around so I can go straight into look at donor.. As this am told can take a long time. How did u fair out with prostap after your lap? Assuming u have to be off it a long time b4 taking any ivf meds?

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Hi Annie, so things didn't go according to plan. (they never do) I had a Lap in Belfast, privately with David Hunter who is suppose to be the best Endo consultant in ni. He said he did remove all endo but I continued to be in pain.... I went to a Peter Barton Smith who is a leading consultant in the world on Endo. 2 months ago I had a 7.5hrs surgery with him to remove endo it was everywhere.he said previous surgery did not remove endo properly. I'm part of the endo Ireland group and there is currently no real specialist in all of Ireland so be careful who you go to. You should join on Facebook Nancy’s Nook very informative about correct treatment. Ask for Kathleen King and she will add you to a secret Endo group in Ireland. You need to consider every endo surgery you have that involves your ovary's will most likely decrease your egg reserve. When I posted the above I hadn't a clue, a lot of research later I should never have taken lupron. Best thing for me was double dose of mini pill it didn't make me any better but slowed endo growth down, whilst I was having periods every month endo was growing and pain was getting worse and worse. Another surgeon to consider is Chris Mann he is also world-renowned endo surgeon, and you can get him on NHS xx

My daughter passed away at xmas and I've been struggling, so I have put Ivf on hold for now, but my nhs round of ivf still hasn't came round yet either xx good luck

I'm just heading out so sorry for mistakes its a big if a rushed post xx

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