Hello my name is Aimee and I am 23 years old. I had been suffering abdominal pain for sometime (I would say near on 2 years) however was always fobbed off saying it was nothing. I finally seen a doctor around Xmas time and she sent me for an ultrasound scan...and lots of scans after. Turns out I had a cyst on my right ovary measuring 15cm! They were worried as my bloods came back high for cervical cancer however an op was booked for January to get the cyst removed. It turns out it wasn't cancer but was endometriosis..the cyst being a side effect. I had the cyst removed however they had to take my ovary too as it was too damaged. They said they could see a cyst on my other ovary however were not concerned. I had a follow up appoint with the doctor however she wasn't very forthcoming with information...I've basically had to research online to find out what endo is and all about having kids. I'm worried I won't be able to have children...and as I only have 1 ovary now I'm scared the other cyst damages it. The doc has put me on the contraceptive pill as a form of treatment.
I wondered if any of you guys had similar experiences? Or could tell me a bit more about how endometriosis effects you? I've been left in the dark and ok considering finding a endo specialist if these exist?
I look forward to your replys thanks, Aimee xxx
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Aimeebish1992
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What an awful situation to be in, I am so sorry to hear about it.
First of all, endo specialists do exist, have a look on the web for BSGE accredited Endometriosis centres, this will give you a starting point.
In terms of having kids, I can't help or shed any light, all I would say is try to keep in mind that there are all sorts of options to explore before you need to worry about this.
I would also have a look at the Endometriosis UK website, there is a load of info on there about endo, treatments and so forth, as well as information on support.
I suspect your surgeon was not not an endo specialist and unfortunately endo is complex and comes in different forms meaning a general gynaecologist more than likely lacks the experience to (a) recognise endo in all its forms and (b) surgically excise it (ie cut it out). General gynaecologists' interests lay in the reproductive organs but endo unfortunately can effect other areas too such us the bowel, bladder, the peritoneal lining and, although rare, even the kidneys, lungs and brain.
Given endo is a complex disease specialist accredited endo centres have been set up nationwide which have a specialist teams consisting of endo gynaecologists, colorectal surgeons, urologists and pain management specialists. If a person is suspected of or has formally be diagnosed as having endo they have the right to be referred to a centre of their choice. A list of these centres can be found at the following website by clicking on the tab "Endometriosis Centres" and then "BSGE Accredited Centres":
Unfortunately it is possible your GP and even gynaecologist has not heard of these centres - my GP hadn't until recently when I printed off the list and gave it to her! Please bear in mind most are NHS but I know of at least one that is private only (Elland Spire Hospital) so if you at some stage need to be referred to one unless you have the funds or private health insurance ensure they are an NHS accredited centre.
With regards to treatment options unfortunately there is currently no cure for endo. For reference there is research now to suggest it may be an autoimmune disease.
The pill is considered one treatment option, although in the main it tends to dampen down symptoms more, though can slow endos progression also. It is sometimes worth trying this first to see if it provides you with the relief you need. However, in your case endometriomas (aka chocolate cysts) on the ovaries, especially the size you had, is indicative of more advanced endometriosis. Therefore it really is important you are seen by an endo specialist.
The gold standard of surgical treatment is excision surgery (ie cutting it out) as opposed to burning it off with a laser (though please bear in mind some surgeons use the laser to cut with too). Burning endo is less effective as it tends to just remove the top rather then remove it from the root meaning, much like a weed, it is more likely to grow back. However, as there is no cure even with good excision surgery endo can, though not always, grow back and it's often said this is after approx. 5 years.
Unfortunately it is really important that women reduce the number of surgeries they have in their lifetime as apart from the usual risks associated with any surgery, with abdominal surgery there is the risk of scar tissue and adhesions forming which can cause pain and other issues in themselves.
Therefore trying hormone based treatments such as the pill, the coil or zoladex early on in diagnosis is not necessarily a bad thing provided a woman's condition is monitored and symptoms managed and is not so advanced as to cause further complications (eg endometriomas on ovaries aka chocolate cysts which could rupture and spread endo and/or cause adhesions, or adhesions forming resulting in organs being stuck together). Please note I am not trying to scare you by saying this, just make you aware that these are possibilities in advanced stages of this disease so finding the right specialist early on in your diagnosis can prevent further complications later on down the line.
As endo is regarded as being oestrogen driven woman can also help themselves by following the endo diet as strictly as possible. I found that following this combined with daily exercise and reducing my stress levels where possible reduced my symptoms to a more manageable level for a good number of years before requiring treatment again. If you search the Internet or even this website you will find more information on the endo diet.
With regards to your concerns regarding fertility unfortunately this is somewhat of an unknown. For some women it can cause fertility issues. However equally other women do not have issues conceiving. There is evidence to suggest the more advanced the disease and if the endo is deep infiltrating rectovaginal endo then this is likely to make it more difficult to conceive. There is a woman on this site, called Lindle, who has recently posted in detail about rectovaginal endo and its worth reading as so very often women with endo have to educate themselves rather than rely on their GP's or the so-called specialists.
Unfortunately I know from personal experience and from reading others' posts on this forum that the myths still exist ranging from "its normal, deal with it" to "a hysterectomy cures endo" or "getting pregnant cures endo".
For reference hysterectomy rarely cures endo in that endo may be on other non-reproductive parts of the body such as those I mentioned above meaning if this isn't thoroughly removed it is likely symptoms will continue to exist as the endo is still there. If you'd like to know more about this again Lindle has posted on here regarding this subject quite recently so search and you will find this.
Furthermore, pregnancy also is no guarantee of a cure either, although there are some reported cases of symptoms either reducing or being eradicated entirely during and even after pregnancy. However, in the main symptoms are merely dampened down during pregnancy only to return afterwards.
I hope this helps and doesn't scare you more. I know in the early years of my diagnosis the more I read the more hopeless and helpless I felt so I steered away from trying to learn more. I trusted the so-called professionals and took all the pills and treatment options they threw at me often knowing little about what they were doing to me. It was not until many years later I realised the importance of educating myself and actively and proactively engaging in my own treatment plan to ensure I received the best treatment available to me. I encourage as many women as I can to educate themselves on this disease as it is necessary and it can also be both liberating and empowering to do so.
Thank you much this has really helped me. I have rang my doctor to get an appointment to get a referral to one of those centres. I know deep down that this is the right thing to do because it is my future and my health that's the most important. Thanks for all your advice xxx
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