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Endometriosis help

(25 Posts)
pattyhoo Thu 18-Oct-18 22:10:40

This is my first post and I don't know all the abbreviations on here yet, but I really feel like I need some help.

I'm 35 and have always had problem periods (heavy, painful & long) and this year they have become irregular and my hormones are all over the place. Over the years I've been in and out of the doctors about the periods but they only offered the pill and nothing else. Until this year.

I've had two ultrasounds over the summer that identified a cyst on one ovary and the other ovary isn't moving properly. The person that did the second scan said there and then it could be diagnosed as endometriosis (which is what I have been telling the doctors all along but they wouldn't agree).

I was referred back to my doctor who now has referred me to a gynaecologist, and I have a 3hr appointment next month. I've got no info on what to expect which is adding to my anxiety about this.

I've been tracking my temperature and I don't go into the fertile range according to the app I'm using. This past month I have tried ovulation sticks and got no positives.

I've never been in a position to try and get pregnant before now (bad partners, or single) but finally I am with a wonderful man and now when we are ready to start a family I feel like it's just too late for my insides.

I'm finding it really hard not to think the worst and panic it won't be possible for us.

I know there are a lot of people that have been trying for years and I am just starting out on this journey, I'm scared about what it will bring. Any advice appreciated.

chocsahoy Thu 18-Oct-18 23:09:04

Hi sorry to hear this is stressing you out. If it is endo there are things they can try to help. Hope you get a good gyno.

just speaking personally I got pregnant fine after having a large chocolate cyst removed but I do sympathise with women who find it harder to conceive. It depends on so many factors I suppose. Try not to dwell on what ifs and just wait and see what they can do to help you xxx

Catren Fri 19-Oct-18 02:35:14

Hi pattyhoo I have a low level of endometriosis, which took me years to get diagnosed similarly to your situation. I had the surgery (keyhole with a camera) to properly diagnose it as well as treat it. They found uterine cells on my bowels which they got rid of (burned away i think) and my periods became a lot more manageable after that - shorter, painless and less bleeding. I also had a polyp which they removed and they flushed out my fallopian tubes so i was in good fertility order. No luck in ttc for the year since so we've started ivf, one failed cycle and they think it's an implantation problem possibly due to endo, so did an endometrial scratch (literally putting a catheter through my cervix and into my womb and scratching around to cause minor injury) which studies have shown can aid implantation.

About to do our second frozen embryo transfer so fingers crossed.

There are things that you can do for endo, depending on the severity, so make sure you keep on demanding additional care and diagnoses. Best of luck!

pattyhoo Fri 19-Oct-18 13:57:09

Thank you @chocsahoy & @Catren I am trying to keep an open mind and wait till the appointment- it's just so hard! It's the only thing I can think of.

I've ordered some bee propolis as I've read this can help with endometriosis & fertility.

Hoping things go well for you both xxx

chocsahoy Fri 19-Oct-18 14:26:55

Thanks - my pg was years ago but I do remember the stress before that of not knowing if I would conceive. Years later I've a child, one ovary removed later after another big cyst, a mirena, no periods & no pain, but I'm blooming grateful to a sensible gyno. I only say these things because sometimes you only see the bad outcomes on tinternet.

Good luck, be thinking of you.

chocsahoy Fri 19-Oct-18 14:33:06

And good luck @Catren too x

pattyhoo Fri 19-Oct-18 17:37:22

Thank you @chocsahoy the bad outcomes do seem to be everywhere I look right now.

I think I'm frustrated at the contradictory information I have been given by drs over the years and this year it's really peaked: one doctor told me I was already too old to start trying for a baby, and another has said endo has no impact on fertility  sometimes I laugh and sometimes I cry when I think about it.

Trying to stay open minded and positive. At least it's Friday!

Cherries101 Sat 20-Oct-18 22:50:57

Have you had a lap that confirmed your endo? If not then it won’t be taken seriously until you end up in hospital with your bleeding, sorry to say. Suggest you talk to an infertlity clinic. at the very least they can refer you for a lap or hsg so you can see how bad the endo is.

fhefelineofthespecies Sat 20-Oct-18 23:05:00

Hi patty. The only way to confirm an endo diagnosis is by laparoscopy so hopefully they'll get you on the list for that. That will also confirm exactly where the endo is and how bad it is.

Endo is weird in that there's no relationship between how bad it is and the symptoms you get. A tiny bit in the wrong place (mine's on a nerve going down my leg) can cause excruciating pain while huge lesions elsewhere can be symptomless. Similarly the effect on your fertility depends entirely on where and how much of it there is, so you might find your fertility is absolutely fine.

If it's a 3 hour appointment I'd imagine they're planning scans. I found it really helpful to track all my symptoms and have everything clearly written down. In the end I was in and out in 10 minutes. I got halfway through detailing my symptoms when she started filling out the surgery form grin

Good luck!

pattyhoo Sun 21-Oct-18 16:38:11

@Cherries101 I've not had a lap yet, but I have been rushed to hospital with bleeding before. Hospital would not believe me that it wasn't a miscarriage even though I told them that was impossible. I was only offered an ultrasound after several drs appointments. I don't feel I've been taken seriously before.

@fhefelineofthespecies I think I will write things down, I'm worried I will be a bag of nerves and might forget things so some notes could help.

Thanks so much for the replies, it makes me feel a bit less alone

BusyBee27 Mon 22-Oct-18 18:56:19

@pattyhoo, I just wanted to chip in, as what you’re saying really resonates with me. I’ve had long, heavy, irregular and painful periods for years and never managed to get anyone to take me seriously until recently! I’m now booked in to have a laparoscopy next week and don’t know if I want them to find something or not to find something - on the one hand, at least I’d know and on the other, I’m terrified they’ll find that I’m infertile (we’ve been TTC for six months with no luck) ... sorry, that’s all about me, but I just wanted to share so you know you’re not alone!

If it helps re expectations for your appointment, then all they did during my first couple was talk through my options, then I had an ultrasound and we talked through that and so on. Nothing too scary! flowers

pattyhoo Mon 22-Oct-18 22:59:00

Thanks @BusyBee27 and good luck with your lap - will you update afterwards? I hope you get the best results.

It helps knowing I'm not the only one going through this. Hoping we will get answers, help and a BFP soon! 

BusyBee27 Sat 27-Oct-18 11:25:38

Thanks @pattyhoo and yes, I’ll pop back after my lap and let you know what the outcome is! Hope your first appointment goes well, whenever it is smile

pattyhoo Tue 30-Oct-18 20:32:24

@BusyBee27 hope your lap goes well this week!

I've had my consultation and decided not to have a laparoscopy yet, consultant said there are two options that, or get pregnant (or try to) - I think trying to conceive now is the best option. We're giving it six months and if we can't conceive then I'll have the lap then...

I've got another ultrasound coming up to monitor the cyst, so if that's worse I might change my mind. Hopefully the cyst is fine and we get pregnant though!

It's strange, no matter how much I want to have a child I'm still terrified. It's always been something in the future and now I'm actively trying and it could be now it's such a different feeling 

fluffycatinahat Wed 31-Oct-18 16:49:20

Good luck OP, wishing you all the best

neverlosehope2018 Thu 01-Nov-18 14:54:51

I have my own infertility problems and endo over 10 years ago and thought I would give you a positive story. After failing to fall pregnant after 12 months of trying I was tested to see what was wrong. It was discovered that I had fibroids, a cyst on my ovary the size of an orange, severe Endometriosis that was in the pouch of douglas and glueing my fallopian tubes togethers. I had a laparoscopy and was told by the consultant that I was in a very bad way, that he had managed to deal with it as best as he could. Mine was an extremely bad case and I was told that I had two options, carry on trying for 12 months and see what happens or go straight for IVF.

I was devasted and we ended up going for IVF, at a clinic in Marbella as no waiting times and cheaper than the UK. I had two cycles but because I had polycystic ovaries, I either underreacted or overreacted to the drugs. Anyway, after two failed attempts and trying to focus on other things, I fell pregnant within a month of stopping fertility treatment. I also fell pregnant with my second naturally too.

Please don't lose hope, I remember how I felt at the time, it was like a grieving process but it is amazing what they can do with a laparoscopy. Both of my boys were conceived in my 30's, the second when I was 35. Best of luck to you and all others TTC.

BusyBee27 Sun 04-Nov-18 09:26:44

@pattyhoo: well, I had a lap done on Tuesday and they didn’t find any Endo, which is good ... it’s also bad though, because it means I still have no explanation for all of the pain I’ve been experiencing sad I’m still a bit sore, but it wasn’t as horrendous as I thought it might be!

I think you’ve made the right choice to TTC before having a lap - the six months will go so quickly and hopefully you’ll get a BFN before you know it grin

pattyhoo Sun 04-Nov-18 09:52:37

@neverlosehope2018 thank you for this! I'm sorry you had a tricky time but it sounds like it all came out good in the end! Gives me some hope!

@BusyBee27 that's got to be bittersweet for you. What are you going to do now? Are there other tests you can have? Sending you positive thoughts and hoping you have some luck 

I'm still waiting to see if I ovulate this cycle - according to the app I'm using to track my cycles I should have ovulated but so far nothing is coming up on the pee sticks. Same last month. I'm starting to think my window of time to test is very small!

BusyBee27 Mon 05-Nov-18 10:33:55

Thanks @Pattyhoo, think I’m just going to take a break from TTC (and from MN) and try to focus on my own health and well-being for a while and see if that helps with the pain (I have a stressful job and travel a lot through the year, so wonder whether the pain is being exacerbated by stress and anxiety). I have a follow-up appointment in a couple of months, so I guess I hope to make progress on my own by then and hopefully get some additional advice or ideas at that consultation!

Thanks for the kind words and good luck with the OPKs! I haven’t had much luck with them over the last 7 months, so try not to panic if you don’t get a positive ... hope you get your BFP soon smile

Boo2you Fri 09-Nov-18 15:50:31

Did you take OPK sticks for the whole month? I did cheap ones for a month and got no positives but the this month I've been using clearblue ones (I have PCOS so my usual cycle is 35 days) and I've just got a positive result today on CD 22 I almost didn't take one today coz I thought it was too late! If you didn't use them for the whole month or didn't use the digital ones you could try this? Hope everything goes ok with the tests!

PaintBySticker Fri 09-Nov-18 15:58:14

Hello. We had trouble conceiving. We started trying when I was 32. I’d always had heavy periods with clots but not painful. After a year’s trying I had the standard early tests as did my husband then referral to a gynaecologist. More trying. An HSG showed nothing. Eventually I had a laparoscopy tha diagnosed and treated moderate endometriosis and the second cycle after the lap I got pregnant. Our son was born when I was 35. I was so amazed. I thought it was never going to happen.

Of course I can’t promise the same for you but I do believe the laparoscopy made the difference for me.

Good luck.

pattyhoo Sat 10-Nov-18 14:13:35

@PaintBySticker thank you for sharing your story. I think if we've not had luck in the next five or so months I'll ask for the laparoscopy. I was just put off by the way it was described and think we should at least try first.

Really tried to time everything right this month but I am convinced it's not worked. Waiting to do a test though or see if AF arrives on schedule.

I'm struggling with the OPK sticks to be honest. I have CB ready for next month. My Natural cycles app thinks it knows when I ovulated based on my temps but it says it was on a day I tested and got negative. Very confusing!!

pattyhoo Sat 10-Nov-18 14:14:23

Sorry @Boo2you I forgot to at you in that reply!

DizzyMerry11 Sat 10-Nov-18 14:45:39

I was diagnosed with severe endo while ttc DD. A HSG failed and so I had to have a lap, which showed extensive endo. My tubes were fused together with adhesions and I had a 8cm cyst on one ovary. I had to have another lap to clear it all out. Conceived DD about a year later but as the endo was severe I was put on zoladex to stop my periods for 6 months as the consultant was concerned about it coming back rapidly.

I did have a few heavy and painful periods after DD but apart from a scan, which showed a cyst, which had then disappeared at a repeat scan, I didn’t have any further investigations. Currently pregnant with DC2 after trying on and off for 3 years.

It may be better to have a lap now as it is the only
way to diagnose endo and it will also show whether this is hindering your chances as it did mine with fusing my tubes shut.

MrsIz Sat 17-Nov-18 10:56:40

I have endo, had it for years. Had one lap and laser to remove it in my early 20’s, back within a few years. Have had a chocolate cyst removed and have had many ‘clear’ cysts over the years too.

Started ttc at 30, confirmed I still have endo and my tubes were ‘slow’ on the dye test by lap and dye - I found both ops were fine to be honest and recovery was fine. Endo mainly in pouch of Douglas and uterosactal ligaments. I also had low progesterone as a result of the endo. I also developed andometriosis.

Always had bad periods but as I have got older they became quite light so worried about my womb lining. Before my ivf cycle I drank raspberry leaf tea and pomegranate juice and that worked really well for me.

Anyway, I tried clomid and iui which didn’t work but my first round of ivf did work and i’m currently 14+1.

I really hope everything works out for you - good luck with the temping, I found my temperature went down around 7 days after ovulation (so at least a weeks before my period) which tipped me off to a potential progesterone problem. Worth looking out for! Good luck! Xx

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