Log in
Endometriosis UK
40,591 members34,766 posts

I feel awful

Hi everyone!

Didn’t know where to go but I feel awful. I had a MRI scan the other day and my gynaecologist believes that I may have endometriosis (on top of my PCOS).

My right ovary have a one cyst with hemorrhagic apparence and the left have a polycystic apparence. Both of my ovaries lie adjacent to each other and apparently...

I was about to get a laparoscopy with my gynaecologist but since I can’t get hold of him after multiple calls and emails, I’ve decided to go to a private clinic as I’m not willing to let someone who doesn’t care, touch my ovaries.

I’m so scared about not being able to have kids, I feel so awful and anxious, I used to have depression and got over it but I feel like all those troubles I have with my reproductive system is giving my depression a way straight back in. I changed my diet and my life style but I doubt it will be enough, my inside is a mess and I can’t think of it getting any better... I don’t know what to do I’ve been crying for days...

19 Replies
oldestnewest

I was so saddened to hear by your news. I would follow your heart regarding someone you trust to do any surgery. I moved from the NHS and decided to pay privately for my lap as I didn't trust my NHS consultant. I think it largely depends on your age and how much/ what has happened to your insides etc. I have PCOS and stage 4 Endo which has done a lot of damage over the years... I had to have my tubes removed etc. I think that's what you need to find out about next. Are your tubes ok? Regarding any cysts, I've been having them all the way through my ivfs and before. I haven't had any luck regarding my ivfs but now I'm into my early 40s.

1) Find out if your tubes are damaged if possible. 2) You could go to an ivf clinic or possibly a GP and get an AMH blood test to see if your ovaries are still working/ young or how much time left you have etc. 3) Follow your heart regarding any surgery and find someone who cares and has your best interest at heart. I don't know how old you are, but I do know a handful of friends who have still got pregnant with Endo and PCOS and have 1 or 2 kids and a beautiful family. I just found my other half too late I think. Best wishes x

Reply

Thank you for your reply, I’m only 21, but I think my issues with my ovaries has been there for a few years already. I feel awful because I ignored the signs my body was giving me, and instead, I had a hard party life style, I wasn’t eating properly, I wasn’t taking care of myself... and now I’m scared that because of this, the damage done may be irreversible...

Reply

Hi benevdot, please don't worry as you are still young. There is nothing wrong with enjoying your life and living it to the full etc. I don't know much about Endometriosis in all honesty, but I wouldn't have thought anything you have done has made anything worse. I wasn't diagnosed until maybe 37 when I had my lap and wasn't getting pregnant/ wanting ivf. I didn't drink, eat badly, smoke or do anything else but over time it's done damage. I suspect my symptoms started getting worse from age or 30. If I were you I would

1) look into an Endo diet... make sure you're not eating any foods that can encourage it. I don't know enough about that but keeping it under control rather than 'encouraging your hormones or whatever' can only be a good thing.

2) Getting a diagnosis via a lap doesn't really help anything... having surgery can sometimes cause adhesion, scar tissue and further problems. It won't personally 'stop it' I don't think.

3) If and when you are ready for a baby then go to an ivf clinic and see if they can test whether your tubes are ok, or damaged by the Endo. Mine were blocked, and had to be removed... I was late 30's though.

4) I would say that if you're having a 'good period' it's a sign that you don't need to worry too much just yet. IVF would hopefully be available to you on the NHS, but check cut off ages where you live, and make sure you start the process well in advance in case you do need a lap etc. If you don't find anyone,

5) you could look into freezing your eggs ivf through fertility clinic until someone you love comes along.

6) Also, save a little each month for a ... just in case (and this could be for anything). Hopefully you won't ever need ivf and you'll get pregnant naturally like my other friends with Endo and PCOS but nothing worse than suddenly having to start saving loads when you'll just want to start things. You are still very young and I hope with all my heart you'll be ok. Just start the ball rolling poss between 30-35 and not later like me. When you start turning into a granny lol, I honestly have very little hope :))

Keep smiling, enjoy life, and change up the diet a bit... best wishes x

1 like
Reply

Thank you for the support you’re amazing... I already changed my diet, I only drink bottled water (used to drink London tap water), I’m trying to avoid processed food as much as possible, I don’t use sunflower oil anymore, I eat more veg, whole-wheats rice & pasta... I’m basically trying to follow the keto diet for my PCOS..

The laparoscopy I’m about to get is just to get diagnosed for endometriosis, even though I’m pretty sure to have it (kissing ovaries).

I’m willing to do anything to “fix” my reproductive system but I’m just so lost.. especially since I was told that my ovaries weren’t where they are supposed to be. I wonder if it’s really possible to put them back in place... I wonder if my cysts will need to be removed or if they will go away by themselves.

It feels like there’s so much going on inside, I wonder if it’s even fixable... I’m so scared of being told that I can’t have kids, I don’t know what I would do...

My period has never been regular, they were coming maybe every 2-3-4 months, but now I’m on the pill for my PCOS so I can’t really tell.

I will look into freezing my eggs it could be a good idea..

I’m trying to stay positive, and I was fine until this week, now I feel like my depression is back worse than ever.

Reply

Please don't feel depressed about it. If you'd told me you were 35+ I would have :(

You're doing all you can. I don't think they can put things back where they were/ should be etc. Regarding the cysts, they will come and go... burst sometimes, especially if they get really big. I've had a few ruptured cysts (again late 30s) and they scared the life out of me as they were so painful. I just wish I'd started trying for a family sooner. My friends with the same Endo and PCOS started around 32 I think and now have 2 beautiful boys full of energy, another friend has a lovely girl aged 5. She was told she would struggle and it probably wouldn't happen. Another friend has 2 ... boy 3, girl 5 I think now. I was just waiting for Mr right lol. I should have been listening to my body. Think carefully about going for a lap right away. Even if they do 'diagnose Endo' there isn't much they can do about it... there isn't a cure and some employers frown or aren't empathetic about it anyhow so I wouldn't use it there. Just my experience. Any surgery can leave you with poss more problems. If you were told you needed it to remove a large cyst or something prior to starting ivf then it's different. You do have lots of time (it's annoying when you hear that, but I'm being honest) ... enjoy life, maybe consider cutting down on gluten (it did me a lot of damage) on top of my Endo and other things. Enjoy life, eat well, wait till you find Mr or Miss right and then see what happens. I know it's possible with your condition as I look at my other friends and their families and wish it were me... but I should have got a wiggle on much sooner or gone it alone with donor sperm lol. PS. Loads of people on this website are very well informed so don't be afraid to ask things, and 'take it or leave it' regarding their advice etc. xBest wishes, stay strong, be positive. Huge Hugz

Reply

Thank you so much, I hope you’re right.. so from your opinion, you wouldn’t recommend me having the laparoscopy done for diagnosis? I’ve heard it can cause some damage but I’m wondering, if I don’t get diagnosed, will I ever be able to get the right treatment? What would you suggest?

To be honest with you, I’m hoping to start conceiving in the next 5 years, which is why I’m freaking out now, I want my body to be at his best when I’m ready...

Ive been feeling like crap this week, but I’ve got hopes, I hope for the best and my family and friends are supporting me even tho I still feel so lonely. I don’t think no one can understand your pain unless they are going thru it themselves.

Hopefully I get better soon and it’s just my hormones playing with me.

I booked an apt with my GP on Monday, I’ll try to find out more, and maybe ask about the AMH blood test you told me about. Xxx

Reply

I think I always knew in my heart of hearts that I had Endo. There were too many alarm bells ringing. I didn't find out till I needed the lap to remove my damaged tubes and cysts prior to starting ivf.

1) Can you find out from your GP... if you are diagnosed with Endo is there any treatment they can give you? Maybe the pill or something else will hold it back. I'm not sure there is much they can do to be honest and although it's nice to know and confirm what you think etc, it didn't change anything for me. Personally I wouldn't get a lap unless an ivf clinic suggested it. After all, they are the ones that want your money and wouldn't suggest it unless abs necessary. I was told to only have surgery just before trying for a baby or ivf, as it can improve then build up again.

2) Find out about the AMH it's a blood test that's supposed to tell you how your ovaries are sort of doing... how much time you have left. I was told mine was so low and I if I was going to start ivf I should start now.

3) Look into if an ivf clinic could test your tubes... to see if they are damaged. No reason why they should be, but mine were damaged by Endo. You may need to sign up to one with your partner, or pretend you are going it alone but want to get tested for donor sperm etc along the line. They will test AMH, and your tubes (not a pleasant test) but both will tell you if there are any probs etc. You don't need to stay with them after these tests either. Just say you're saving for a bit.

4) If you have a partner you could enquire at the GP about free NHS ivf and see what they say. I think they would have to do any tests first to see how bad things are and if you need it etc.

You're still young. Try not to worry. It's one of those things, that unless you have it yourself I don't think you can relate to what others are possibly going through, and their worries, concerns and any pain etc. Keep in touch and pm me if you just want a chat x

Reply

I see what you mean, I also feel like I’m not taken seriously (apart from my mum), I can feel there’s more than my PCOS, I’m not a doctor but I just know it and it drives me mad that doctors don’t understand how worried I am.

But if I don’t get the laparoscopy soon my symptoms will always get worse, no? Wouldn’t it compromise my change to get pregnant if I wait ?

Is IVF a thing to be done only when you try to get pregnant ?

Reply

I wasn't taken seriously by my GP and neither was my mum... who was more serious. We were both continuously told it was IBS or most people have small cysts etc. I think only we know what our bodies may be going through.

Re Lap: I don't really have any definite answers, only what I was personally told, best double checking with your GP if she can answer you or put another post on this site under "Endo" section. My understanding is... the Endo will always be there, it can never completely be removed as it's never just in one place. After it's removed I think it can just start to grow again? I did feel good for around a year after my surgery and then I started to feel the symptoms and pain kick in again. It's a few years on, and I do have a great deal of pain from adhesions and scar tissue. Things are all stuck together inside me. Yes, I did leave mine and did nothing but pop pain killers and I did end up losing my tubes. My GP only did an ultrasound and said they wasn't too concerned and any cysts would go by themselves.

Have you had an MRI... I think they could give more definition/ clearer results possibly of any damage... although not show Endo itself.

If you want to start a family I'd get checked out at an ivf clinic... with the basic blood test and tubes etc if possible. They will tell you definitely whether you'll have any problems but always rec you try ivf as they want the money. They will 'flag up' any damage later on. I don't think there is a real way of preventing Endo from doing damage.... but I'm not the one to ask, and I left mine too late and was never diagnosed until too late. I was mid 30's though.

Yes, IVF is a thing to do when you're trying to get pregnant, but if you wanted to know if there was anything damaged inside that could stop you from getting pregnant naturally (such as my damaged tubes) then they could do the tests. This would be if the GP won't do any tests for you. Mine wouldn't and I had no choice. I wanted answers so I went to them to find out how much .... time I had left (regarding eggs and aging) and was their any damage... (i.e blocked tubes). You would have to say you've been trying for a baby for a year if you're in a relationship, or you want a child and are considering using donor sperm and want to get a few tests done/ get their opinion etc...

Put up a new post regarding your question "But if I don’t get the laparoscopy soon my symptoms will always get worse, no? Wouldn’t it compromise my change to get pregnant if I wait ?" and see what people say. My friends daughter isn't trying for a child (aged 27) but suspects she has Endo. She wanted a lap to get diagnosed and was told 'no' as it would do more damage, and even if diagnosed they wouldn't remove it during that first surgery. So it would be like... great we confirm it's still inside you but we won't get rid till your 2nd surgery. They said the best time to have it is before you start trying straight away to improve your chances. x

Reply

I’m lucky to have my mum taking me very seriously. She doesn’t want my actual gynaecologist to touch me (as he hasn’t got back to me after my multiples calls), so she booked me an apt with a professeur* back at home (*French term basically meaning that he’s one of the best specialist to help me as he’s the one teaching to every other doctors and got years of experiences).

I see where you’re coming from, that’s one thing I’m wondering, can’t I get diagnosed AND treated in the same surgery, instead of having a second one? Because I’m not planning on waiting for ages if they find something, ideally I want to be treated as soon as possible.. that’s why I don’t wanna leave my “case” in the hand of the NHS, neither does my mum because they are taking AGES and I don’t think they really care.

So I hope that the professeur I’m seeing will be able to help me.

And since it may be harder for me to get pregnant that most women, I’m not planning to wait forever before trying to conceive. Maybe 2-3 years?

Also, I can easily live with the symptoms, the pain can be annoying but I don’t need to take painkiller as it’s not that painful. Very incomfortable sometimes, but my struggle is more mental I think, as to me the pains or symptoms are a constant reminder of my potiental fertility problem (which is why I’m feeling so depressed)

I’ve had a MRI done, :

“No latex allergy

The anteverted uterus appears normal in size, shape and texture

Endometrium appears regular in outline and texture (LMP 2-3 weeks ago)

The right ovary is enlarged containing an avascular cyst which has a striated heamorrhagic apparence and measures 38x55x51mm

The left ovary is enlarged displaying multiple immature follicles and has a polycystic appearance. It measures 25x26x33mm

Both ovaries lie adjacent to each and apparently adherent. This may be related to adhesions caused my PID or endometriosis.

Collerate clinically with swabs.

A small amount of free fluid is noted within the POD measuring 1cm

Conclusion :

55m right ovarian haemorrhagic cyst

Left ovary polycystic,please correlate with bloods

Apparently adherent ovaries and presence of pelvic free fluid, correlate clinically to rule out PID or endometriosis”

Since I’m seeing my GP tomorrow I’ll ask him to get the test done to see about my fertility rate,and if hes not willing to help me then I’ll have a look into IVF clinic see what they say.

When I was younger, and even last year with my ex boyfriend, I only had unprotected sex, I was not on the pill at that time but I never got pregnant (although, they did not ejaculate appart from a few times by accident so maybe that’s why..)

I’m going to put a post now and see what others says x

Reply

Really pleased your mum is able to help and listening/ sharing your concerns. I never had any luck with the Gyne consultant at our hospital. It was clear from all my tests that I needed surgery prior to starting ivf and she kept us on a waiting list for nearly 2 years... time ticking and all that. Eventually we found the money and went private. By then it was too late for us to have a free IVF go on the NHS. Anyhow, she didn't take me or my other half seriously and used to just say "welcome to the NHS and make stupid jokes when we clearly wanted tests, surgery or answers, suggestions".

It sounds like you have 'adhesions' already from your MRI. At least they managed to do that for you... the scan that is. It does sound like it could be Endo. I'm not sure I can advise, even if your ovaries are stuck you don't want them damaged further possibly from surgery. Mine were 'kissing' as well. My AMH was low before surgery and after, it pretty much said my ovaries were failing and had enough, my AMH dropped much lower.

When you see the GP, ask if " If you are diagnosed with Endo from having a laparoscopy" is there anything she/ they would be able to do to prevent it getting any worse?

2) Is there anything they can do/ prescribe now that would stop your possible Endo getting worse without the lap?

The NHS can be good, but can also take a long time on waiting lists. Start saving a little for a 'just in case fund'. Hopefully you'll never need it and can spend it on a holiday or put aside for a baby when they come.. and I really think you're young enough that you will still have one or 2 whether it be through help with ivf or naturally. x

Reply

Wow you’ve been very unlucky it’s really sad to read... how are you handling with all this though?

Had to book another appointment with my GP as we only had time to focus on one problem (I had protected intercourse Monday and since then I’ve been bleeding and had cramps, she took a swab from me but said it’s probably because I don’t take my pill on time, 8-9-10 or 11pm instead of 6pm on a regular basis)

Anyway I booked a double appointment so I’ll definitely ask the questions you mention, because it’s crazy how endometriosis is hard to figure out without getting more damage done to your body...

Thanks so much you’ve been so helpful again hope you’re okay x

Reply

I have been through a lot. 1 thing tends to spark another thing. I remind myself many others are going through much worse. It's tough though. I'm going through last round of ivf at the moment (we have frozen embryos). I get tearful and depressed/ low sometimes, but I feel better when my Thyroid levels are low. It all plays a part. I'm more of a realist as well. I'm almost certain this won't work. Not being negative, just realistic. If things can go wrong for me they do.

It's crazy that that a GP can only listen to 1 thing. I mean seriously, most of these things are connected anyhow. Surely it would make more sense for them to deal with as much as they can, to prevent multiple apts etc. It's crazy.

Glad you've managed to book another apt. Keep hassling them, don't 'give in' like I did, or feel you are wasting their time. You're not. Keep asking questions, listen to other people's experiences, research online and think things over. That was my mistake... thinking I'd be wasting my GPs time, especially when they dismissed it with IBS and poor diet... it's all your fault kind of thing.

Hope we can stay in touch. Be thinking of you. If you want to chat... you know where I am lol. Best wishes x

1 like
Reply

Don’t know where you’re from but I’m sending you love and positive energy from London, life can suprise you you know, so you should keep trying and try to have a positive mindset about it. I know it’s hard because I’m exactly the same, people say negative but like you said it’s more realistic, but sometimes miracles happens and for this to happen you need to allow, the mind is a powerful thing. Keep trying, be positive and believe that you’ll make it! ❤️

I’ll keep coming back so I think they will end up getting bored of seeing my name every week and start taking me more seriously!

And yes I would love to stay in touch, I said to my therapist today I don’t think anyone can understand my pain unless they are going through themselves because it’s so easy for people to say - even though they have good intentions - you’ll be okay it’s nothing because that’s the only thing you can say. So now I don’t bother talking to them because they don’t know and I don’t want them to feel bad for me or upset them when I say I don’t need their help.

1 like
Reply

Hi I'm so sorry you are feeling this way, but know you're not alone. I run a closed support group if you're on Facebook it's specifically for Endo and mental health you would be welcome to join. Love and strength to you x

facebook.com/groups/2158766...

Reply

Just requested to join x

1 like
Reply

Hi benevdot,

Welcome to the forum and I am sorry to hear you are feeling so low.

Please know that we are all here to support you. Just take it one step at a time - everyone with this condition is affected in different ways and it can be overwhelming when you don't know what is going on inside or what the future holds.

I don't know if you are aware but Endometriosis UK do have a free confidential helpline run by volunteers who all have experience of endometriosis and it may help you to talk to someone about how you feel and what you are going through. You can find times it is open here:

endometriosis-uk.org/helpline

We also have support groups who meet up from time to time and you can see if there is one near you here:

endometriosis-uk.org/find-a...

I hope this helps and please take care - let us know how you get on.

RicEndoUK

Volunteer Moderator

1 like
Reply

Hi! I tried to call the helpline but it was closed, I’ll try again soon. Thank you for the support

Reply

Hi benevdot, it's closed today but is open tomorrow from 10:00-12:00 and then 19:00-20:00 if you want to try again then.

Reply

You may also like...