Endometriosis UK
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Severe endo#laparoscopy#severe period pain#ivf#what do I do?

Hi Ladies, just joined this group as hoping you can shed some light and help me out here and just people to reach out to as feeling really alone going through this awful crippling condition.

Just had my 3rd lap and hysceropy last wk - stage for endo, and recto vaginal endo on bowel. Suffered from extremely painful periods for years, but since feb this year (2017)was getting a period then the pain continued for a further 2-3 weeks (womb, pelvic and severe bowel pain where I not able to sit down much).

Doc said last wk after the lap that he has done everything he can at this stage with the endo and because I have deeper endo spread,and I want a family still, he will not do a further stage operation until a family is complete. Although my tubes were unblocked, he says they are still abnormal and I have a very 'bulky' womb, which he believes is the cause for the pain from the womb to the bowel. He said there is nothing I can do to help this for now. He said I have a very slim chance of a natural pregnancy and as I am 37 yrs of age, he has urged me to go for ivf quickly to help my chances of being a mum.

I am in so much pain right now - my period came a day after my op last week and it is the worst pain I have endured. I have taken mefanamic acid (what dr prescribed after op) to no avail, I am taking ibuprofen, paracetemol and co-codemol - all of which is having no effect either. In the past, with this pain, ibuprofen usually helps the pain a little. I am in total despair, I have been married 2 months, have a very supportive husband, just in the process of buying our first house, off work but without sick pay, in so much pain right now I dont know what to do. Is there anybody who is going through the same and can share their experiences or advise me of what else i could try please for pain?why are no pain killers working? could it be something else?

Docs have said to go away, try for a child or two, if this works, have the coil put in between pregnancies, and then to come back to have a hysterectomy and bowel surgery (thats the only option for surgery left).

My husband is so upset seeing me go through this pain, and has asked me what I want. I have said I want us to have a family (at least try) but to do this, I have to be ready to go through this awful pain each month. I am totally lost, and my head feels messed up with what I do re the ivf and just want to hurry the whole process up. i have an nhs app on tuesday to see what they say about ivf on nhs and I am also looking into clinics in London for ivf. costs for good clinics are £15k plus for one round of ivf. I dont know whether to go for top end clinics or cheaper clinics with lower success rates, any advice on specialised clinics for ivf dealing with endo patients would be greatly appreciated.

I am sorry to waffle on about my issues, in bed right now with a hot water bottle on my tummy, feeling a little positive in writing this message to you all. I know you are not doctors, but it provides me with a little comfort knowing there are people out there who are going through similar experiences and that I can share mine with.

Thank you x

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I wish there were a magic tablet or set of rules to follow to make the process easier.

I know where your coming from although my situation is a little reversed. After 2 yrs of trying to conceive without any joy I was refered to an NHS fertility consultant & after another 8 months of waiting had a round of ivf. I was completely heartbroken when it didn't work for us. I guess I'd put so much faith into it. Every month when my period arrives it brings with it the blues. I've been placed on clomid tablets to help make sure I'm ovulating in the mean time before I am due for a laperoscapy.

The pain & the disappointment that comes with the period each month & fear of running out of time drives me mad. But it's just one step at a time. If you have the money I'd go for the best private ivf treatment with best success rates. Although our NHS is brilliant, it's not been a quick process for me. I'm 35 now but I first went to the doctors about fertility I was 33 & im still going through the slow process of even having endo officially diagnosed & still not getting pregnant & still suffering the pain.

I wish you the very best & hope you are feeling brighter after your period clears off. Each month of the wait is a little chance that you could conceive naturally :) it's just a painful process!!

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Thank you beebuzzy. just to see a reply on here has made my morning. I got bupa private medical insurance through hubbies work earlier this year so I had my lap done privately. I am thinking the same as you, dreading each month but will find the strength to get through the awful cycle, if we want to concieve. as soon as i am better we will try naturally (still a small chance) and maybe its better i go for the ivf with the best clinics, although there is that chance of miscarriage/ectopic (although this can happen in natural too). I really hope it all works out for you, pls hang on in there with nhs, keep bugging them, you may be heard quicker with your position on the list. good luck and let me know how you get on x

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Big hugs! I'm so sorry you're going though this. I'm so pleased that you have a support, concerned husband looking out for you.

I was diagnosed with secondary infertility in April 2017 (age 30) after 12 months of trying to conceive. During my laparoscopic surgery in July 2017 they found endometriosis on my uterus, ovaries and Fallopian tubes. The tubes were bent and buckled and no egg or sperm could pass through. We will keep trying to conceive naturally, but if we can't then IVF will be our only option.

You mentioned you're in the process of buying your first home. IVF can be very expensive. You will need to sit down and do your numbers regarding IVF, mortgage payments + everything that goes along with owning a home. You mentioned you're currently off work with no pay. Hopefully you'll be back at work soon, but this may be a chance to see how life is on 1 income (like while you're on maternity leave).

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Thanks Jane, hope it all works out for you. I have read about so many success stories with people who struggle to concieve but then it just happens. I have to weigh up all my options with house costs, ivf etc, i think we can probably afford one round with a top clinic but if this fails, I don't know what we would do unless we borrowed money from family. I am not counting on the nhs to do much as the wait is probably very long and I don't have time on my hands. I am praying that it happens naturally or that the one round we go for with ivf is successful, although, we have to also prepare for the worst as we may not be lucky. Its all such a long painful journey and its upsetting that a lot of us are going through it. Most people I know around me have concieved naturally, get pain free periods, so I sit there wondering, why me? why did I have to get this horrid condition. Dr said I have done nothing but be born when I asked what did I do to keep getting this endo.

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Hi there. Firstly remember to be kind to yourself. It's very hard to make life decisions when you are in a lot of pain. I find hot water really helps ie. sitting in a hot bath (at least while the meds start to take the edge off the pain a bit).

I was given a very similar diagnosis about six or seven years ago. That there was a chance of me becoming pregnant naturally but IVF was probably the best idea. We went to a private IVF clinic (NHS wasn't an option in our area) and after a few initial tests I decided to put the process on hold and try naturally for a bit longer. Since then I've had major surgery to remove endo from my bladder and am awaiting more surgery on my bowel at the end of the month. Trying naturally to conceive has become more difficult with every passing month due to the symptoms of endo.

I'm 40 now and feel my time has run out with regards to having a family. I now wished that I had tried IVF (better to try and fail than not know) when I had the chance. In my defence I was just so confused and emotional about the whole issue at the time and couldn't think clearly. I couldn't even talk to my friends or family about it as I felt it was a guilty secret.

I'm not trying to influence you in any way but please make sure you talk about your options openly with some one and continue to review your decisions and feelings every six months or so.

Good luck and fingers crossed for a happy outcome 😊🤞

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Thanks Cath! I wish you the best of luck on concieving, pls dont give up. I do believe our path is written for us so some of it is fate, although we have to put the effort in too. I do agree with you, this is a pretty emotional journey and you feel confused and lonely. I dnt really have anybody to confide in so i do try and talk to my husband. If i spoke to others, i know some would judge, and I have relatives who would both judge and gloat and make nasty comments so for now I have to keep it taboo. i have my nhs app this morning to discuss ivf, so at least i will know one way or another if i have a chance with them.

x

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Hi. £15k for ivf seems quite high. You might want to post on the fertility network to ask about certain clinics. If you are within the criteria donating some eggs can make the costs significantly less. Also possibly look outside of London as everything seems to be more expensive there. Again if you qualify some clinics offer a refund if the treatment is unsuccessful but you still pay upfront initially. You have to meet age, amh level etc but again fertility network ladies might be able to advise.

One thing to note, the process of ivf can inflame the endo. Again no-one seems to say for sure but in my cycle on down reg and stims may endo pain got worse. I just put up with it but it's something to consider.

My pain after the lap was terrible too i guess because of the healing process but it did calm down. I hope yours does too x

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hi Emma

I am looking into various clinics and the too few in london start from around 15k, others are under 10k and you might be right in looking outside of london or even abroad, although my issue would be the timr off work that I cant afford to take (unpaid if i have time off) so i would need yo weigh all options.

Its a difficult one as you can choose the best clinic and still have an unsuccessful round. I have joined the fertility network on here so can get some ideas. I hope your pain is better now. I am still getting awful rectal pains during and after my period, sonething i have to put up with if i want to try for kids. The pain can be so unbearable that i often am not sure I can go through this and would just rather have a hysterectemy, but at 37 it saddens me that this is my only option left.

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Cath77, please don't think 40 is too old. My friend had a baby via ivf at the age of 45. Xxx

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Did she use her own eggs? As many people who have babies in their 40s are actually using donor eggs, but this is not widely known. I've just turned 39 and my ovaries reserve is now borderline low. Which is normal. Having babies even through ivf in your 40s is still unusual.

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She had had a couple of failed goes in the UK and had been told there was no point continuing (low reserve), but wanted to give it one more go and went to Spain. She has never indicated that she didn't use her own eggs, but in any case I have never seen her happier. She'd also lost a baby boy at 35 weeks, so things had been very tough.

I had ivf at 35 and in addition to severe endometriosis, I also had a very poor ovarian reserve and poor response to the drugs. I was given less than 5% chance of it working, but I was lucky and the quality of my eggs was good and it was successful.

Lots of luck to you all. Xxx

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I think go for a clinic with a higher success rate even if it costs more. You don't have time to mess around with multiple cycles. And two poorer cycles will quickly add up to more than the cost of one good one.

Is there any way you could travel out of London for treatment? Clinics round me are about £6k for a standard round. You could afford a few train fares and hotel stays for that price!

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Ps I'm in Northamptonshire btw.

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