Endometriosis and getting pregnant - Endometriosis UK

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Endometriosis and getting pregnant

Please can people tell me some positive stories about endometriosis and conceiving?

Did you fave surgery? Or fertility treatment?

I need some hope!

Thank you xxx

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Hi,

I sadly needed fertility treatment, but both my fresh cycles of IVF ended in sons. I was diagnosed with unexplained infertility, but I now know that I have had endometriosis for over 20 years. I wish you all the best x

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Thank you so much for replying! That’s great news on the children 😁. I’ve had an ectopic.

How old were you and what was your AMH?

Xx

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I cant remember my exact AMH, but I was told at the time, that they were normal for my age. I had my first fertility treatment at 36 yrs of age and second at 39 yrs of age. I had struggled for years though with horrendous periods and bowel problems. When I had my second lot of IVF, they struggled to reach one of my ovaries, as it was really high and attached to my bowel. I didn't get huge of amounts of eggs collected either, but they say quality and over quantity. X

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hi. Hope you are well 😊. My first pregnancy was natural and we didn't know about the endometriosis which due to the extent of it the specialist is sure I've had since my teens ( I had all the symptoms but it never got mentioned). Back in 2016 and struggling to have a second child I had emergency surgery for a ruptured appendix, turned out to be a ruptured large chocolate cyst and everything quickly made sense 🙉. I had to have extensive surgery as I have stage 4 server deep infiltrated endometriosis, it's everywhere and I had to full frozen pelvis. They couldn't remove it all my bowel and bladder are beyond help but managed with diet these days. We were told ivf was the only option and due to the extent of the endometriosis it was a long shot ( one ovary was reconstructed and wasn't expected to work). Last Nov we did a cycle of ivf and much to everyone's surprise I responded really well, we have some in the freezer and the one put in stuck and I'm 30 weeks with are little miracle 😊. I wasn't keen on ivf but it really wasn't as awful as I expected. Good luck and I hope you find what works for you😊. Xx

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Oh wow that’s an amazing story! Did you have a low AMH? It’s so nice to hear positive tales! Xx

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Hi, i was diagnosed with stage 4 severe endo with chocolate cysts. Both ovaries are stuck together. I was told initially I had unexplained infertility. This was the wrong diagnosis. I was shocked to learn the extent of my condition as I've been trying to conceive for 5 years. I will need a laproscopy to clean up my endo, remove my cysts and unstick my ovaries. I asked my consultant, can you fix me, he said yes, will I be able to conceive naturally, he said yes, once everything is tidied up. This has given me some hope and I can't help but have a positive feeling that I will conceive once I have my op. I may have to go down the IVF route but I'm going to try naturally after my op.

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Your story gives me hope too. I have an appointment with a private gynaecologist in 3 days time to discuss. I’m excited and nervous! Xx

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Fingers crossed for you. Just some more info. Endo is very hard to diagnose with scans etc. In my case, I had blood filled Cysts, hence endo or endometrioma Cysts. My MRI scan with the injected dye showed the endo was sticking together my ovaries and there was some on my bowel surface. It may be worth persisting with an MRI scan with contrast/injected dye as this shows up the area more so. It's a daunting thing to think about but it's definitely worth it. You can't feel a thing with the contrast. The worst thing about an MRI is the noise. Otherwise it's all painless. But you get a better scan and clearer diagnosis with it.

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Yes I may do. They only thing is with a laparoscopy they can help treat the endo by removing the adhesions as well as diagnose. With a scan they can just diagnose. I have a long list of questions for my specialist on Thursday so I will add this one to the list 😁😁. Thanks! It’s great that your consultant is so positive!! 😁 xx

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Hi Kitscat

I have a beautiful son. I was told I had one of the worst cases of endo my gynae had seen. We tried for ages, and then just as we were referred for IVF we conceived naturally. I think I had given up by that point, so I weirdly relaxed.

Good luck - it is heartbreaking and tough, but you are an amazing strong person and whatever the outcome you will come out the other side x

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Thank you!!!! I really want this to happen for us. Your story fills me with hope 😁 xxx

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Do you feel that "pregnancy helped the endometriosis" like so many doctors say? How are you today?

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The best thing to do is not think about it.

My 2nd baby is 6 weeks old and he is our little miracle. Our daughter was born 6 years ago after a year of trying...found out a year and a half ago I have endo (demanded investigations due to ttc for 2 years) had a lap but they didn't remove endo.

Had a miscarriage just before my lap. Then 4 months later after not even thinking about it we got pregnant. 3 years of trying and he truly is amazing.

Fingers crossed for u xxx

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This is amazing!! Thank you!!! I’m terrified about having another ectopic. Were your tubes blocked? Xx

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No tubes weren't blocked. They couldn't visibly see endo but took biopsies and that's how we found out. Sending u lots of luck and hugs xxx

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I’ve recently been put on provera until my specialist and fertility apt’s, On 19th June & 22nd August. I’ve been trying for a year with no luck. Gynae says she thinks my tubes are blocked but no test to confirm this yet. My endo was diagnosed as severe 😔 waiting to get it removed x

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Oh I’m sorry jade but please don’t lose hope. My friend has severe endo with a frozen pelvis and is now pregnant after her first round of IVF. It can happen!! Are you following the endo diet? I’ve just started! I had endo diagnosis last year after my ectopic. It was devastating but onwards and upwards. How old are you? xxxx

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Aww bless you , I am sorry about the ectopic

:( , and I am 28, been on microgynon for 10+ years with painful heavy periods but like everyone else, it’s ignored and told it’s normal. Came off microgynon last April TTC, endo pains started in Nov, emergency surgery for appendicitis in Dec (I told them periods were worse than this pain) but they said they could see fluid on ultrasound. Turns out they couldn’t find my appendix due to the endo. Now just waiting for the apt.

Gynae put me on provera last month due to an overnight stay in the hospital with a flare up x

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I have severe endometriosis so we went straight to IVF. I now have a 2yr little boy x

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Wow this is great! Congratulations! Was this your first IVF? Did you have surgery for your endo? Was your AMH low? Many thanks Xx

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I had surgery and got pregnant relatively quickly after that having had no luck for a year. 2nd baby.... no problem conceiving! Good luck xx

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Ah this is great news! How bad was your endo? Was your AMH low? Thanks for reply. Positive stories are really helping me! Xx

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I have stage 1 endo, we have up after trying for three years, got cats in August to complete our family and fell pregnant in November. Our miracle is nearly 8!

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This is an excellent miracle!!! Xx

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Hi

I had a lap to remove my endometriosis. I ended up having ivf as i wasn't consistently ovulating (unrelated) plus we had issues with my partner's sperm.

I have a daughter from our first frozen transfer after a failed fresh cycle.

Added bonus although my periods are still very heavy the pain is minimal. I used to really suffer before i got pregnant. My daughter is 10 months!

Good luck with it all!

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Huge congratulations! Did you try conceiving before your surgery? X

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Yes! I had surgery in 2013 but we didn’t start trying until 2015. Took six months and we were really lucky to conceive naturally. I had terrible morning sickness but no complications! Wishing you the very best of luck! Xxxx

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Oh also for two years prior to trying I had monthly acupuncture sessions and I am really convinced that played a part in conceiving. I know another lady with Endo who is now 7 weeks pregnant who also swears acupuncture played a role! Obviously you’d need to look into it yourself but I recommend it if your body needs so extra help! Xx

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Yes I am looking into acupuncture. I’ve heard such positive stories from it. Xx

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Thank you xx

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If you get excision surgery with an experienced endo surgeon with extensive experience and low recurrence rates, even with stage 4 endometriosis, your chances of conceiving will be high after surgery (many people I know who underwent well-performed excision with true experts who are well-trained fell pregnant naturally after around two months). Obviously tubes need to be unblocked/cleared during surgery and not severely damaged. I know one lady who was left with one tube after surgery and conceived from it.

Severity of the disease doesn't correlate with infertility or fertility. It's about what organs were damaged, how much and how good the surgeon is. PERIOD. DO NOT LET ANYONE TELL YOU YOU HAVE TO GO STRAIGHT TO IVF BECAUSE YOU HAVE SEVERE ENDO/STAGE 4 ENDO. Unless your tubes are blocked or both ovaries removed, you can conceive fairly easily.

But choosing THE BEST ENDO SURGEON in your country is PARAMOUNT. All these women went to THE BEST centre in my country and one of the best in Europe, not just any centre.

I do not know anyone who successfully went through IVF personally, so get that info from others :)

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Thank you for the advice! X

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Hello,

I had a excision surgery with a double bowel resection in May last year at a bsge centre and was told to 'try' for 6 months before ivf referral. Halloween I felt as though it had spread to my diaphragm (which my gynae thinks is probably the case), however that was my last period as we managed to conceive naturally much to everyone's surprise!! Now 31 weeks and looking forward to d day :-)

Good luck, I hope you get the right support as it can be a really emotional rollercoaster x

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Wow! Huge congratulations! So do you think the surgery made the difference? Did you try for long before hand? X

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Thank you :-)

I think it must have as my left tube was blocked and that's the tube we conceived from so I am so relieved I went for surgery.

We didn't try before as i was having yearly surgeries leading to more surgery so we were only given the 6 months. I have a feeling the diversion of the diaphragmatic endo made me forget the worries of trying as I was then on a countdown to ivf as had convinced myself it was never going to work if it was spreading that far 6 months after surgery x

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I have stage 4 endo and I have a nearly 2 year old daughter conceived naturally within 6 months of "let's see if it happens" and clearly it did!

I've never had surgery and it was too extensive for keyhole and I wasn't ready for open surgery, I was treated with Zoladex.

Good luck x

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Thank you for sharing!!! You can conceive with endometriosis! X

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Hi, I also had an ectopic in Oct 17 and had surgery to remove it. I then miscarried in May 18 but conceived again naturally Aug 18 and now have a beautiful baby girl. She was born 10 weeks early due to me having a bicornate uterus but she’s doing well now. I was terrified of having another ectopic but they scan you at 6 weeks to check and I spent the whole of my pregnancy worrying about everything but it worked out in the end and was all worth it.

Also I absolutely hated it when people said this to me but when I stopped worrying about it it happened. I basically gave up and then I got engaged and distracted myself by booking my wedding and planning and within a couple of cycles I was pregnant. I think there’s a lot to be said for relaxing and not thinking about it, but I know that’s the hardest thing when you want something so much.

Xxx

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Yes I think having another ectopic is terrifying me. Your story has really given me hope so thanks for sharing. Yes it’s the insensitivity of people that is the hardest. I am aware that I am obviously very sensitive about the topic too. For those who haven’t struggled it’s the most natural thing in the world so they don’t understand flippant comments such - when are you two going to have a baby etc. I seem to be surrounded by people who are pregnant or have had babies, at the moment so I’m trying to distance myself a little. During my first ICSI cycle I had a ear and a wisdom tooth infection so I don’t think I was in the best health.

The whole thing has really strengthened my relationship with my husband though - silver lining! 😁 and it’s taught me what is important and who is important. I don’t think I sweat the small stuff as much anymore 😁 xxx

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Hi,

I didn't find out I had endo until trying for my second. I tried for about 2 years for my first child - she is now 6 - I did have all sorts of investigations for infertility and had PCOS so was about to start some meds when I conceived naturally. It took another few years trying for my son. I had 2 miscarriages - one which was a missed miscarriage. I eventually went to Nurture to discuss IVF and he said I had a 'septum' which divided my uterus and may have been the cause of the miscarriages. I had the laparoscopy to remove it and they found I had endo. I ended up having a couple more hysteroscopies to check all was ok and then I was planning to do IVF. But my period never came back. I was pregnant naturally. I feel very lucky but it shows it can happen. Very best of luck to you.

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Thank you for sharing! These are ok such great stories they fill me with hope! X

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All such*

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Hey hun

I was diagnosed with severe endometriosis in 2017 after undergoing a diagnostic laprascopic surgery and was told I wouldn't be able to conceive due to size of the cyst they found. I was referred to a number of specialists and instructed to go on some treatment for six months to shrink the cyst and then have surgery to remove it. After a weeks of referals and forseeing my eminent bankruptcy I decided to stop consultation and decided I wouldn't go through with the treatment, if God wanted me to have children I would, if He didn't then that's that,;I was devastated though but with time I accepted it . So I never took any fertility treatment but a few months later I was pregnant, I was then told I'd have a difficult pregnancy but I didn't everything went smoothly, the only complication I had was my Asthma which got worse as I got closer to delivery and had to be induced a week earlier to EDD and deliver via C -section. My son is 7 months old now,he's happy and very healthy.

So that's my story I wish you all the best sweety and I hope my story gives someone hope somewhere.

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Wow!!! You were certainly meant to be a mum. Thank you for replying. Did they cut away the scarring during your surgery? X

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Hi Kitscat

I have endo and had stage 4 endo previously, already had a laparoscopy some years ago. When i was ttc i was told by my gynaecologist to start IVF as opposed to surgery but after 4 failed IVFs, i decided to go back to basics and treat the endo with a laparoscopy - 1 month after surgery i fell pregnant 🤰🏻- in my mind i wish i had treated the endo first before embarking on IVF. Good Luck!

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Wow. This is very similar to my friend who tried for over 2 years to conceive. It does sound like it is too much of a coincidence that you have your surgery and conceive straight away! It has to be the surgery surely? I hope you don’t mind me asking what is your AMH and how old are you? Were your Fallopian tubes twisted or were you ovaries stuck down? X

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Hi Kitscat,

I live in the USA, but I get a great deal of support on this site, so I would like to share my story regarding your post. I was 37 when I got married. I tried immediately to have a baby. No luck. Always had awful periods and chronic pelvic pain which I attributed to the work I did as a health care worker because it was very laborious. I saw a fertility doctor when the pain got extreme, after over a dozen gyn's didn't know what was wrong with me or dismissed my pain. Turns out I had Stage III endo., which the doc dx'd me with after he did a lap. He excised the endo and I got pregnant within a year.....exactly a year later to be exact. There was a lot of healing and I had 3 months of lupron therapy, so I was out of commission for about 6 months. I delivered a healthy baby boy at 39 years old. 18 months later, horrible pelvic pain -- the endo came back. Particularly endometriomas on my ovary. Another lap. Eight week later I was back at the fertility doctor's telling him I thought I was pregnant from a test. He immediately did an ultrasound and blood work in his office and it was confirmed that I was pregnant. I delivered a healthy baby boy at 41 -- 2 weeks before my 42nd birthday. The 2nd time the odds of me getting pregnant were less than 1% the doctor said because of my age and medical history of surgeries, csection and endo, but I prayed a lot and just kept positive in my mind. I mean really positive.

So, I hope this gives you some inspiration and keeps you positive. I know that my story is not everyone's story, but the purpose is to let you know that a good mindset is helpful. I ate really healthy, lots of veg, didn't drink alcohol, drank a cup of coffee a day and just went about my life. I hope that my story helps you, and that whatever ways you use to help you get pregnant work for you! I send you lots of good wishes across the pond!

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This is an amazing story!!! Well done you! You must be over the moon with your family. Thank you for replying. It does give me hope and I think it just confirms to be that I probably need to explore the surgical route before either trying naturally again or using my FET. I think being sensible and thinking less haste, more speed is the sensible option here.x

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I had excision surgery 13 months ago, I still was having a hard time conceiving. I Had stage 4 endometriosis. Went the IVF route and currently 9 weeks pregnant on first frozen Embryo Transfer. Best of luck to you!!

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This is exactly what happened to my friend. There is evidence that surgery helps increase the chance of the embryo implanting. Huge congratulations too you!! Did you have a fresh transfer first? Have you frozen embryos too? What is your AMH? X

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Thanks so much!! It’s been such a hard road I still can’t believe it extremely grateful. I had my eggs taken out first and freezed then a couple of months later I did the frozen transfer. My AMH was around 7, and I had good egg quality which my doctor was surprised with. Wishing you all the best!

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I had the key hole surgery and after was able to have my son but had to be constantly checked and ensure he was growing in the womb rather than the outside. I had a few problems during the 9 months but his healthy as anything.

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Did you have problems conceiving before the surgery?

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Yes

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Hi.

I didn’t find out I had endometriosis until we had been TTC for 5 years & 10 months. I have a grown up son from a previous relationship.

Once I had my first laparoscopy in June 2017 treating the endometriosis I conceived the next cycle! But sadly lost the baby very early at 4.5 weeks pregnant. The endometriosis re grew & to cut a long story short I had 2 more surgeries- second lap in March 2018 & third lap in July 2018 with a endo surgeon as endo was all over my rectum. It was quite major surgery & I had 5 incisions. Afterwards I followed the anti inflammatory diet took bee propolis , l took clomid to boost ovulation ( even tho I naturally ovulate fertility dr was happy for me to try clomid again-did 4 failed rounds in 2016/7) & took low dose aspirin to suppress inflammation , evening primrose oil to help lining before ovulation and used progesterone cream till days 26 of cycle. I fell that cycle ( 2 months post op) & my fertility doctor prescribed progesterone pessaries & prednisone for first 12 weeks( raised nk cells) my baby was due 3 days ago but no sign of her!

It is totally possible to possible to conceive with endometriosis.

If you are going down the surgery route would have it done by an endo surgeon as they are experts in that field & recognise all forms of endometriosis. I think by clearing out all the endo has helped me have this baby.

Depending on your endometriosis I would have the endo treated before pursuing fertility treatment should you need to ( so you know it has the best chance of working)

Wishing you good luck with it all xoxo

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Thank you so much for your reply. Huge congratulations on your natural pregnancy! Any sign of the baby yet?

Yes this is what my gynaecologist has said-I need surgery to clear everything out. I had one ectopic and my biggest fear is that I could have another. I think if I surgery then had another ectopic there was nothing I could have done. We are going private for it all and it is so expensive but we really are keen to have a baby soon!

Please keep me updated xx

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I have suspected endometriosis,not officially been diagnosed yet. I have suffered very painfull heavy periods as soon as I started & the pain has got much worse this last year & also now suffer so much pain in my bowel.

During a hycosy the doctor said my left tube was blocked & she saw adhesions.

We've been trying for 2 years now. I have a nearly 8 year old daughter which we conceived easily. My AMH level was tested in Dec & was 6.7. I'm 34 years old.

What is your AMH level?

The consultant I saw in Feb said ivf would be my best option & could refer me about my endometriosis but would be too late for ivf after that due to my low AMH.

I feel like getting my endometriosis sorted could help me conceive but it could be a long wait...

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Hi there PG84, thanks so much for replying. So my AMH is 9.4 and I had it retaken a few days ago as it was a year ago I had that level. I wanted to see the rate of decline. I’m 33. Although my fertility specialist and my gynaecologist both said not to pay attention to AMH as a marker for ovarian reserve. It was originally intended to be used as a marker of how much stimulus to give the ovaries in IVF treatment. My gynaecologist said that there is evidence that having endometriosis effects the receptors in the womb which enable the embryo to implant. He feels that surgery is for the best to help improve success for IVF as well as natural conception. I have cysts on my ovaries and I had one tube removed because of an ectopic last year.

It’s all such a mind field! How long would you have to wait for your surgery?

Xx

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I'm not sure as the consultation was pretty dismissive about that option & just talked about IVF to us. I've heard so many things since then of people having the surgery & conceiving naturally I think its something I need to push for when I have my next appointment in August with him.

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Hi Kitscat

I have stage 4 endometriosis. A missing ovary and the endo has also spread to my diaphragm, colon, liver and other areas outside of my reproductive area.

I have been trying to conceive for 6yrs. Had 2 laps one in 2016 (when I was diagnosed) and 1 in Feb this year. I did a round of IVF in April and it failed.

I just found out I'm 5 weeks pregnant 2 days ago. I conceived a month after my failed IVF cycle. I wish you the best of luck. Don't give up!

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Hi kitscat! I am 32 years old and have had endo in my both ovaries for the last 5 years. Several cysts, each with different size, biggest was about 11 cm (huge, ha!?). And, good news! I got pregnant last year and now i have a healthy 4 months old baby boy. And the endo regressed during the pregnancy, doctor told that they would disappear but they didn't. Yet, they dramatically got smaller in size; the biggest decreased to 7 cm. 3 years ago when i went to the hospital for i had severe pain on my abdomins, a council of doctors decided to remove my endo along with my ovaries and my womb! Can you imagine that! They said we will put you on early menaupose. When i told them that i want to become a mother, they said it is impossible. They were about to make me sign the paper that would instantly take me to the surgery room. Fortunately, i didn't trust conventional medicine and its butchers. And i got pregnant with two grapefruits size cycsts covering my ovaries! I can tell all women to try every way that they can find before they take any decisions related to their feminity and reproductive organs. Keep your hope alive and go for conceiving! With love and peace

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This is an amazing story! Thanks so much for sharing!!! Did you have any surgery to treat your endo? X

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No, i havent had any surgery for endo. 2,5 years ago, i went for bioresonance therapy by the guidance of my gynecologist, it really helped me with the pain and depression. Moreover, it made the cycsts start dissolving and getting smaller ( 1 cm smaller after 5 sessions of bioresonance therapy). Howevern i couldnt go for more sessions as it was quite costly. But if you have a financial resource for that, i highly recommend anyone get bioresonance therapy. Meanwhile, i did gluten and diary-free diet during the therapy and used some herbs, as well. Anyhow, i kept on using the herbs for the last 3 years giving breaks from time to time. I did many other things that make a long list from praying to dancing, walking barefoot to singing, homeopathy to reiki, yoga to taichi and soooo on. I am still searching for other ways to get rid of what's left and find a way to the sustainable wellbeing. Endo has been my teacher, i should say, which has helped me wake up from my self-betrayal.

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Hello,

Good luck with your journey, I have endo & PCOS I had surgery to remove the endo but it had already caused tubal damage which at the time felt like the end of the world, I really wasn’t expecting to be told any of this when we went for the initial fertility investigations I had absolutely no signs of the PCOS but looking back I did the endo I just didn’t know what they meant at that time.

My husband and I did need IVF but my little one who is nearly two was a first time IVF and I am currently expecting our second later in the year who was first time FET, it might not be a conventional way to get pregnant but in the end that doesn’t matter, I did make sure my diet stayed healthyish (I love pizza) and removed all alcohol, increased my exercise but I feel that my soon 2 be two are the reward,

I hope that you have success which ever path your fertility journey takes

Xx

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Hope you are well. My first pregnancy was natural. But one of my friends had endometriosis and got pregnant. I don't know what your symptoms of endometriosis are like. My friend's symptoms are not very serious. She believes in herbal medicine because there are no side effects. Maybe your symptoms are serious or something else. I think you should go to the hospital first and listen to the doctor's advice.

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