Do I have endometriosis? Or could it be c... - Endometriosis UK

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Do I have endometriosis? Or could it be cyst? ovulation cramps? or pelvic inflammatory disease?

hannah291 profile image
5 Replies

Hello, I'm 22 and believe I may have symptoms of endo

I had an ectopic pregnancy 2 years ago which was treated with one shot of methotraxate. I was told by my doctor that the likely cause of this was because I was prescribed TWO morning after pills due to a mistake by another doctor (there was an investigation into his mistake). Apparently a pregnancy due to failed contraceptive pills increases the chance of an ectopic, so the fact I had a double dose was the suggested reason behind the ectopic. I had ultrasound scans after this and I was told everything looked in perfect working order.

Before and the years after I had not had any problems and didn't worry any more about it however the last 6 months have just not felt right around my ovaries.

Every month pretty much a few days after my period finishes I get strange tugging, pressure, heaviness, pinching and shooting sensations on both sides where my ovaries are. Sometimes it feels almost tickely. It is also followed by aching right under my hip bones. I would not describe it as painful as it is only very slight. I also get slight back ache with this. I don't know whether this is simply ovulation however.

The second symptom is rather new and has only happened once. A month ago I was having sex with my partner and we had to stop as I suddenly felt a horrific pain deep inside me, the pain was the worst I have ever felt and I nearly vomited from how bad it was. It lasted for about 15 minutes before going away. We had sex the next day and the same thing happened after, although it was slightly less painful. My doctor said this may be bruising from hitting my cervix as he is quite well endowed but I am sceptical about this as I have never experienced this pain with him, and the sex was no deeper or rougher than usual. We have had sex regularly since then, in the same way and I have not had this pain since.

My periods are regular and never heavy and I have only slight cramping, certainly nothing notable however I used to never get period pain so it has definitely increased slightly. I do however get diareah with my periods which happens nearly every cycle and has since I first started. In-between my last cycle I bled brown blood for about a week (something thats never happened) and then my normal period arrived a week or so later. I was so concerned by this and the strange sensations in my ovaries that I took about 5 pregnancy tests, paranoid my pill might have failed and I was expering an ectopic again. I am definitely not pregnant

I have no pain with passing stools or urinating at all.

I also suffer from fatigue, however I also have depression and used to suffer from ME 5 years ago, so again it could be a mixture of things.

Due to the fact I am desperate for a large family when I'm older I am praying it is not endo, but I feel it may be :(

A doctor said to me the pain and aches I feel might be scarring from my ectopic, which she said would improve as I get older. (I don't plan on having children until my 30's)

I have also been looking at the chance of ovarian cysts and pelvic inflammatory disease which also has very similar symptoms. I have tried to persuade my doctor to test me for PID but after doing a test for sexually transmitted diseases (all came back negative) she dismissed the idea of me possibly having it.

I am very concerned as I feel something is not right and any help or advice would be greatly appreciated.

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hannah291
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hannah291 profile image
hannah291

Anyone? :(

emmajane127 profile image
emmajane127

Hi Hannah291,

We have a fabulous pains and symptoms publication which would be great for you to,fill in and show the doctor at your next appointment.

endometriosis-uk.org/endome...

There are also plenty of other publications you will find really useful, including all about how endometriosis is diagnosed.

Hope you find all of this informative and useful,

All the very best

Emma

Impatient profile image
Impatient

Lots to address here.

Let me start with the sex pain - I suspect your Doc is correct on this one,

A healthy uterus can flip forward the usual position and flop backwards to the retro-verted position. It is supposed to do this.

In endo ladies it often gets stuck in the retroverted position due to endo and adhesions and there is stays.

This retroverted position puts the cervix at a very different angle in side you and unless your partner and you alter the direction of entry he's gonna be smacking in to the cervix and it can be very painful.

So two options there - change direction of penetration when it had flopped back.

The same will apply to inserting a tampon. Contrary to the lovely illustrations always included in the box - the direction of insertion does need to be adjusted for the retroverted position or it my hurt.

There's a good illustration on the following web page

inverteduterus.com/retrover...

You can see how the angle or the cervix and location are quite altered when this happens.

If it has corrected itself forward again then don't bother changing your habits, but in the event it does flop back and stays there, then either your partner should try penetration from behind or you on top facing his feet.

You can have surgery to unstick a uterus stuck in the retroverted position but there's nothing to stop it happening again.

20 % of all women have a retroverted uterus and those with endo it is extremely common because it gets stuck in the retroverted position with sticky adhesions.

Very rarely is this reflected in illustrations in anatomy or biology books. They usually show the most common angle for the uterus.

So that's one issue partially explained.

Bleeding brown blood is normal - actually it is just old menstrual lining that didn't quite come away in your last period or menstrual lining that has been stuck there longer than a monthly cycle - due to taking BC pill back to back for example. It has had longer to loose the oxygen and turn brown, just like unwashed blood stained linen goes brown, or scabs on the skin go brown. nothing of great concern other than it does look grim and gives you a worrying shock. It will happen more and more as you get older if you keep having periods and something you kinda get used to.

As the old lining sheds away from the walls of the urterus is leaves exposed tiny wounds which have not yet clotted and started to rebuild the new menstrual lining for next month, so they bleed fresh oxygenated bright red blood till they clot (the time taken varies depending on how good your body is at clotting that week.)

Ectopics and surgeries can cause scar tissue called adhesions to grow, infact any tummy trauma can trigger adhesions to grow, even an external bump or fall on to the stomach. Now these grow as a layer of protection against future damage and they have a tendancy to keep on growing untill being very sticky as their name suggests, they stick to a nearby organ, tissue or ligament.

These are pretty strong strands of glue. They could be anywhere and stuck to anything and tug when you move in a particular way, or if you empty your bladder and it deflates rapidly and has adhesions on it these can tug on something else.

Same with ovaries they are quite flexible little creatures normally and it wouldn't take much for them to suddenly get caught up in sticky adhesions. it is very common infact for this to happen and ovaries end up twisted at weird angles and giving you grief.

They then need to be surgically unstuck and put back where they are supposed to be. nd adhesions can be cut or burned right back cleaning up your tummy of them.But they will regrow and the respite from adhesions may last few months or a few years before suddenly everything is getting glued together once again. The more endo you have - if you have endo- the more wound sites there are for these adhesions to start to grow from and it can become an overwhelming mass of gluey strands linking all the organs and tissues together in a giant sticky spiders web.

So they may well account for the weird ovary sensations you are talking about - and while it doesn't mean you do have endo it doesn't mean you don't either. Adhesions are bound to be there from the ectopic plus any other traumas in the past. even from when you were child.

So that may explain some strange feelings.

Other possible causes are an ovarian cyst - but as they usally affect one side much more than both at any one given time, I am more inclined to say that a cysts is not causing the problem this time - but an ultrasound scan would pick up a cyst - if there were more clues to it being there. A scan would also detect any fluid swelling to a fallopian tube which is a condition called hydrosalpinx. Again this is not necessarily endo.

On balance I'd say it is much more likely from your history that adhesions are the issue rather than endo. Obviously endo cannot be ruled out, but as it takes surgery to diagnose endo and surgery encourages yet more adhesions to grow, unless you have very good reason to have a laparoscopy (like a twisted or stuck ovary or a cyst or hydrosalpinx) then it is probably not worth pushing for that at this stage of things.

If you are not ready yet for baby making and you think you might have endo then the best way to reduce any chance of endo spreading from backflow of periods along the fallopian tubes is to take long term period stoppers like the mirena coil - which would stop your periods for up to 5 years at a time. It would stop any monthly tugging of the ovaries if you are not having periods and they are related to the menstrual cycle.

You could also use the contraceptive pill back to back to reduce the number of periods in a year to 3 or 4 instead of 12.

Having the runs during a period is common enough that it doesn't signify anything. Just the process of monthly cramping in the pelvic region and changes to your hormones can account for that.

Nothing is screaming endo at me from what you have written but they don't rule it out either.

I think if you stop the periods it will resolve a lot of the symptoms you are having and in the event you do have endo would help with that too.

If in the course of time symptoms do get worse or more painful and you are struggling to cope and your quality of life is severely impacted, then ask your GP to refer you to a gynaecologist or further scans and tests, but at this time period management would seem to me the best way to go at this point in time.

Others may have different advice for you, but the above is my thoughts on the situation.

FairFacedFairy profile image
FairFacedFairy

Hi Hannah291,

I would ask your doctor to look into pelvic inflammatory disease again. Your doctor is wrong to dismiss it because your STI results. Did you have surgery for your ectopic pregnancy or just methotraxate? If not, ask for a referral to a gynae. There's no easy way to diagnose PID so they usually give you antibiotics and see if it clears up. This happened to me to rule it out as my symptoms didn't get any easy by taking them.

I'm not saying you have it as I'm not a professional medic but it's not something to rule out either...it's worth a shot of taking the tablets as there's lots of reasons as to why people get PID, it can be simply bacteria! And make sure if you do receive them, that your partner does too as he can pass it back to you.

Hope this helps.

Faye xx

hannah291 profile image
hannah291

Thank you very much for everyones input, I really appreciate this advice as its much been much more helpful than anything I have got from doctors.

I went to a different doctors the other day and he said it sounds like either PID or endo, and even agreed my old doctor should have investigated it further and not dismissed it. He has referred me to see a gyno but it will take a few weeks. I am beginning to believe it is most probably PID, as today my symptoms actually reached a painful level, and I've been experiencing stinging pains right around my belly button, a very tender and bloated pelvis and stomach.

I am going to ring my doctor again tomorrow and see if they can speed up the test for PID, as I really don't want to wait around for a few weeks whilst it messes up my ovaries :( If I do have it I have no idea how long I have had it or what damage its done. I've read that if its caught in the early stages, effect of fertility is minimal but I've not been able to find any info on what constitutes as 'early stages'.

Has anyone here at PID? if so what does the pain feel like? and what damage has it done?

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